My name is Tania Tirraoro, founder and now CEO of Special Needs Jungle Ltd. We registered SNJ as a non-profit organisation in August 2014.
I am a journalist, author and parent of two sons who, a few years after this photo was taken, were both diagnosed with Asperger Syndrome.
In July 2015, I was elected as a Trustee of Genetic Alliance UK, the international umbrella charity that represents the views of its members (including SNJ) on all issues concerned with Genetics and Genetic & Genomic research and medicine at a strategic level. Genetic Alliance UK is also the parent of Rare Disease UK and SWAN UK for children with undiagnosed conditions. The charity is a member of Eurordis, the European Rare Diseases Organisation
I started this blog back in 2008, to help other parents, like us, who are entering the jungle of special needs education. It's a scary, stressful place. I was born in North Wales, and raised in a village near Warrington, Cheshire, in a single parent family. I was always taught that if you wanted something you had to go out and get it, which is what I've always done. I may live in Surrey, but my northern working-class girl roots formed my character and I firmly believe the weakest among us should be supported and not vilified, victimised or abandoned.
I worked in broadcast news for a decade before we had our boys. Going back to work full-time wasn't feasible because we knew instinctively that they were not, "your average bears". But it was a journey, and one that many others will recognise, to discover why that was, what it was that was different and how to find the help they needed. There was little help from schools; not because they didn't want, to but because they didn't have the knowledge or the resources.
We have been through the process and come out the other side with statements of SEN - soon to be transferred into EHCPs - for our ASD sons and funding for them to attend an independent special school. It wasn't easy, it took a lot of research, time and hard work. We didn't use a lawyer but did have support from the National Autistic Society's Advocacy Service, which is an excellent port of call.
We were initially told our younger son wouldn't get a statement because his needs weren't severe enough so it wasn't worth trying. However by the time he was in junior school his progress had stalled and because his learning style was so different to most children it became apparent that he could not be adequately supported in mainstream.
We applied for a Statutory Assessment but were turned down. We appealed to SENDIST and the LA backed down before the hearing, agreeing to assess our son.
I realised if I wanted my son to get what he needed I had to put in the work myself. For many long hours, I researched all the policies and information available from the LEA on the internet, analysed all my son's reports, and wrote an extremely long document complete with many appendices about why my son should have a statement. I included Ed Psych reports, Paediatricians reports, OT reports, examples of his work, lists of strategies tried and IEPs generated and quoted any relevant information I could.
I also built up a good relationship with our SENCo who provided me with as much information as I needed, without overstepping the boundaries of what she was "permitted" to do by the LEA.
My son was given a statement without further argument but the Draft Statement said the LEA thought he could be supported in mainstream. I wrote another long document, using the reports in his Draft Statement that I had not previously seen and went through the statement's recommendations line by line finding it was full of holes. I sent my new document back to the LEA, including a basic cost analysis for the support it said he needed compared with the fees at the independent special school we had found that could meet his needs. I pointed out that having put this much effort in I would be fully prepared to go back to Tribunal if necessary.
Within a week, they had agreed to pay my son's fees at his new school, much to our relief and that of our bank manager. Having learned so much during the process, I wanted to use the information I had gathered to help others in our situation. The moral of my story is, I believe, never give up on what you believe in, ask for help if you need it and be prepared to put the work in because no one else will.
A year later, we walked the same road getting a statement for our older son. I found the resources on this site useful for myself to refresh my memory! Again we were initially turned down but minds were changed and now he too is funded at the same school. I didn't have to go to Tribunal myself, largely, I believe because of the case I put together, but I know many who have.
It shouldn't be like this and hopefully with the SEND system, launched in September 2014, we will see big changes. I worked on the Surrey Pathfinder trialling and developing the changes, as co-chair of Surrey's Parent Carer Forum, along with SNJ Director, Angela Kelly so we both know the reforms inside out.
I hope parents can use this blog to find useful information and resources and that you will feel able to share your own experiences and resources with you.
Read Tania's posts
Exploring Autism and Music, a chance to listen, learn and participate
Research into different aspects of autism can reveal many unexpected and interesting findings, which can sometimes help to improve the lives…Continue reading »
Helping carers and disabled children with Qigong
We are all living in stressful times. World events, both near and far, can leave us feeling anxious, fearful and…Continue reading »
How do you help a disadvantaged child build confidence and find success? [Conference]
Aside from having a special educational need or disability, one of the biggest barriers to success at school is your…Continue reading »
SEND 2017, the state of the special educational needs system revealed
The annual figures for special educational needs came out yesterday and I spent the day poring over them and making…Continue reading »
The SNJ #GE2017 Manifesto for Special Educational Needs and Disability
You can’t have failed to notice that, here in the UK, we’re hurtling towards the snap general election called for…Continue reading »
Tackling the lack of diversity in books for deaf children
It's Deaf Awareness Week and a new book has been published, written to boost deaf awareness and tackle the lack of…Continue reading »
The frustration and heartbreak of Pathological Demand Avoidance
We've covered Pathological Demand Avoidance (PDA), which is a condition on the autistic spectrum, a few times on SNJ and…Continue reading »
Good mental health support needs one thing: proper funding
It’s Mental Health Awareness Week. Depression is the leading cause of ill health and disability worldwide. According to the latest…Continue reading »
SEND, support staff and challenging behaviour in schools.
You may remember that we had Tess Philbert on the site not so long ago, talking about person-centred planning. Tess is…Continue reading »
Your views invited to help set the agenda for Whole School SEND
Last month Barney and I participated in the Whole School SEND Summit, spreading our message in a roundtable at the…Continue reading »
Explaining new funding rules for early years children with SEND
Funding is always a hot topic in local authorities and schools and nowhere more so than in special educational needs. From…Continue reading »
Special needs lawyer calls for election pledge to solve SEND disarray
A young lawyer specialising in special educational needs, who himself has SpLD, has warned the parties in the upcoming election urgent…Continue reading »
Inclusion and putting the ‘Disability’ back into SEND
A leading advocate for inclusive education, Richard Reiser, says he is increasingly concerned about the direction of inclusion in the…Continue reading »
Holly’s autism film starring role helped raise her classmates’ awareness
Last week, I said Autism Awareness had graduated from a day to a week. Dear reader, I was wrong. It's…Continue reading »
Wanted: Occupational Therapist AND two Speech and Language Therapists for outstanding Surrey school
This is something we haven't done before - a job advert. It's not a regular thing, but my sons' old…Continue reading »
Children with SEND risk rejection by mainstream schools over funding gap
Pupils with special educational needs and disabilities (SEND) are at risk of being turned away by mainstream schools due to…Continue reading »
Is autism a difference or a disorder? The truth is in-between
I don't think anyone is unaware of the word 'autism' these days. The problem still lies in understanding how vast a…Continue reading »
Supporting families to participate in making person-centred decisions
One of the big things that was supported to be improved for disabled children and families was person-centred planning. De-jargonned,…Continue reading »
What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
It's rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago…Continue reading »
All about ALLFIE and its campaign for truly inclusive education
My sons' headteacher at their independent special(ist) school, once said to me that inclusion was about being included in society…Continue reading »
- SNJ’s Christmas SEND wish-list for Santa and a few thanks too…
- Tips for keeping up your child’s literacy over the holidays
- Shining a light on great practice in SLT and communication
- Surrey gets a spanking from Ofsted in its SEND inspection
- Adelle’s dyslexia helped her find her strengths as a GB athlete
- Talking about alcohol with your special needs teen
- New format for SNJ’s SEND system Flow Charts
- Future in Mind? Progress on child mental health plan a national disgrace
- Can you help harness parental knowledge about genetic intellectual disability?
- The Scott Schools and Colleges SEND report: It’s really rather depressing
- Parent pens The Children’s Guide to Autism
- #CRDN2016 Looking to the future where patients and carers are always involved in their care
- Testing for children with SEND: The Rochford Review
- Why sharing best practice in autism benefits everyone
- We challenged our son’s school over disability discrimination
- Amplify your experience of rare disease with Rare Barometer Voices
- Why did my PDA son have to fail in five schools before I was listened to?
- Autism Hero Awards: A win for SNJ!
- The advocate leading a summit to make patient and medical collaboration less ‘rare’
- What parents wish teachers knew about their special needs child
What we said, where we’ve been, what we made in 2015!
As promised, we've rounded up some of our articles from the year by type, which will help many of our…Continue reading »
Merry Christmas from Special Needs Jungle
We've had a busy year at SNJ in 2015 and we just wanted to wish you all a happy Christmas…Continue reading »
One family’s wild ride in the pursuit of post-16 provision
One of our favourite things at SNJ is to share parents' experiences of their family's experiences of the conditions that…Continue reading »
Will these figures make councils think twice before forcing parents to the SEND Tribunal?
At the end of last week, the government published the detailed statistics from the Special Educational Needs & Disability Tribunal…Continue reading »
What parent carers told the Minister at his SEND reform stock-taking session
Earlier this week I attended a round-table event at the Department for Education hosted by the SEND Minister, Ed Timpson.…Continue reading »
Disabled Students Allowance cuts: Is it time to extend the EHCP to universities?
What do you call it when someone says one thing but their actions show they really mean something quite different?…Continue reading »
Patient Solidarity Day 2015
We should all have access to the healthcare we need: good quality, affordable care without fear of discrimination. This…Continue reading »
Don’t let over 16s fall through the EHCP information cracks
[caption id="attachment_12537" align="alignright" width="350"] Luca, who's 18 today and in Surrey Youth Music Theatre[/caption] Today is Son1's (Luca) 18th birthday!…Continue reading »
Some Sunday wisdom from Maya Angelou
It is time for parents to teach young people early on that in diversity there is beauty and there is…Continue reading »
#WiseWords: Strong souls come from suffering
Out of suffering have emerged the strongest souls The most massive characters are seared with scars. ~Khalil Gibran~Continue reading »
Have your say to lift the barriers to play for children with complex disabilities
Sense, the charity that helps people who are deafblind or who have sensory impairments, are running a public inquiry into the provision of…Continue reading »
An SNJ Infographic of the latest SEND statistics 2015
Last week the DfE released its annual "Special educational needs: an analysis and summary of data sources". It was late, as pointed out…Continue reading »
Best Practice: a parent’s view of a good EHCP Transition experience
Many families have not had a great experience so far with the transition of their child from a Statement to…Continue reading »
Ask the DfE: Put your SEND queries directly to the man at the ministry
We have something special for you today - a chance to ask the questions you want about SEND to the…Continue reading »
Selective Mutism: When anxiety shuts down the power to speak
The days are slipping by so quickly that we're already into October half-term and three quarters of the way through…Continue reading »
Mental Capacity and young people with SEND: A quick primer
Earlier this week I attended the SEND seminar of the law firm, Boyes Turner who represent families having difficulties getting…Continue reading »
The what, when and how of Independent Support for the EHCP process
We haven't carried an article about Independent Support for a while and now we have one today and another coming…Continue reading »
Inspirational SEND education events and a speech that says it all
[caption id="attachment_12121" align="aligncenter" width="600"] The gathering[/caption] [caption id="attachment_12119" align="aligncenter" width="600"] The launch team with Sarah Driver, centre[/caption] Yesterday Angela and…Continue reading »
Driver Youth Trust report: SEND reforms led to “Fragmented provision, chaos and confusion”
Later on today, Angela and I will be attending the Westminster launch of "Joining the Dots" a report out today…Continue reading »
Consultation on SEND Accountability launched. We look at the big picture
So finally, what we have been waiting for – the public consultation for setting up a system of accountability for…Continue reading »
- Merry Christmas and thank you from SNJ
- £31 million extra SEND reform funding- but is money the whole problem?
- Flu vaccination available for children & young people with learning disabilities in England
- Childhood acquired brain injury- Would you know if your child was affected?
- How goes the development of the Local Offer?
- A shameless shout out for a very special school
- National survey launched: Are SEND Further Education students getting the choices they deserve?
- Anti-Bullying Week: Violent Bullying of SEND children widespread in England’s schools
- The power of reflexology on children with special needs
- Mum of dyslexic children launches Drive for Literacy
- Our flow charts included in latest official SEND reform info pack!
- An unintentional Mystery SEND Shopper
- Transfer from LDA to EHCP? Can I be bothered?
- Our SEN legal Twitter #SNJSENchat with IPSEA: Read it here
- Don’t miss the first answers from SNJ’s “Ask Jane” legal agony aunt!
- Trainee teachers rate SEN as one of poorest aspects of their training
- How a school’s Nurture programme is supporting students from ‘catch-up’ into ‘heads-up’
- Teaching teachers and parents about social media safety
- Some ideas for teachers get started with parental co-production
- The SNJ week in review – posts, presentations and parties!
- Our best personal posts of 2013
- Merry Christmas from Special Needs “Jingle”!
- Cerebra supports a seat enabling family activities for disabled children
- Christmas is coming and my son is getting stressed…
- Join us & back Jane’s campaign to improve legal rights in SEN Bill
- Two big days in one – one global, one personal, both huge news!
- Some SEN statementing questions answered
- Join Carers UK and act now so parent carers are not left behind
- When Tania went to #BlogFest and other stories
- Confirmed: No statutory support for Uni Students in SEN reforms
- The letter ‘D’ for Disability, M’Lud
- Crossing over: have your say on moving to the new SEN system
- How to help manage your children’s pain
- Warrior to worrier: When an SEN mum drops the ball
- Something for the weekend: Draft Code of Practice published and lots more
- SEN Reform: It’s going to be a busy autumn
- And the Rest-E winner is…
- NEW Special Needs Jungle site launched!
- Add the power of your voice to #ThisIsMyChild
- Gently changing perceptions: DownSideUp, a blog we love
- Merry Christmas from Special Needs Jungle!
- SEN Pre-Legislative Scrutiny report- a précis and my views
- My pick of parents’ guest posts on Special Needs Jungle this year
- Vitamin D deficiency – ASD Son2 suffers, your child might too.
- What now for Asperger’s?
- Son1 is 15 today-and proof that the right support can work miracles
- Pathfinders, politics and parental co-production
- SEN Minister offers assurances to parents over Bill wording
- Speech Therapy to stay within educational provision – so said the man from the DfE
- Charlotte’s amazing brain – a heartfelt story about childhood stroke
- Keep Us Close – Scope’s campaign for better local disability services
- Can you help with Pathological Demand Avoidance Research?
- Common sense prevails with more time to test the SEN reform proposals
- The Brain Injury Hub – a brilliant resource
- 10 Tips for Developing Your Child’s Language Skills
- SEN Reforms: professional views to the select committee
- Beech Lodge: A new school offering a practical approach to learning
- Parents on the Warpath…and other stories
- Stop the DLA Takeaway campaign – your help needed
- When SEN Tribunal looms, seek legal advice
- Special Educational Needs stories of the week
- Christmas Giveaway – a copy of my SEN Book
- SEN & Special Needs Stories I’ve spotted this week
- “What’s the difference between a problem child and a child with a genuine problem? – Video
- SEN round up for this week
- Book Review of Special Educations Needs: Getting Started with Statements
- IPSEA – A wonderful charity for free advice and support for SEN
- SEN stories that caught my eye this week (w/e2nd Dec)
- New website to increase SEN charity awareness
- SENAC for Special Needs Advice in Northern Ireland
- Why I’m backing the call for a revolution in ICT teaching
- Finished at School – Important Campaign by Ambitious about Autism
- SEN Stories of interest in the last week
- What do parents of a newly-diagnosed child need?
- My article in SEN Magazine: Can teachers recognise SEN in bright pupils?
- SEN stories that caught my attention this week.
- 1-2-3 Magic – the discipline system that saved my sanity
- Autism diagnoses are more common in an IT-rich region.
- A brilliant review of my SEN book from an award-winning blogger
- Education and Training (Young People with Autism) Bill introduced.
- Should children with Asperger Syndrome automatically be statutorily assessed?
- The Lamb Inquiry – a review
- The Lamb Inquiry
- New Autism Act Passes Final Hurdle
- Don’t Write Me Off – NAS campaign
- Daily Mirror Launches Caring For Carers Campaign
- Back to school – but is it the right one?
- More House – A School To Be Proud Of
- Books I recommend for Special Needs
- Journey’s End for our Statement – And a Brighter Future.
- Rose Dyslexia report – will it be enough?
- An Actor’s Life For Him.
- Asperger’s Links Blog
- Give ASD children the school provision they need
- Mother behind autism advert meets Brown – London Evening Standard
- Child-Free.. as free as the wind blows..
- See my other blog – Not As Advertised
- UK lacks Adult Autism/Asperger’s Services
- Long ago..when I was somebody
- Many autism cases ‘undiagnosed’ – BBC News