About Tania

Me & my boys circa 2003

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.

http://www.amazon.co.uk/Special-Educational-Needs-Getting-Statements/dp/1908603585We 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.

Me with Sons1 & 2. Image by Angela Melling
Me with Sons1 & 2. Image by Angela Melling

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

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  • Karen Sutton

    If my son is already at a special independant school. Should I say why we think he should continue in this school and that this is the school for him

    • Special Needs Mum

      Karen – yes you should point out what this school is doing for your son and why you do not think it can be replicated in a mainstream school.

  • Thank you for sharing. You did an amazing job advocating for your sons. I, too, had to do much advocating for my middle son. Beautiful boys!

  • Special Needs Mum

    Thank you for your kind words and I hope your son has the provision he needs now x

  • amanda walsh

    My son is currenlty in yeat 3 main stream with a full 25 hour statement, but latey his behaviours have become extreme and he has been refusing to attend school. He isnt managing his school work and it usually very bright and itelllgent, we just dont know what to do and the school seem to be no helo. we kow he would be much happoer in a specialist school were he would get full support in the right form, but dont know how to go about this. We are based in manchester. any advice would be most helpful
    amanda

  • Nikki

    I think my son had PDA and am fighting to get it recognised. Would love to add you on FB or twitter but can’t find you xxx

  • smita

    Tania, i have just come across your website and it is such an apt title because it really is a jungle. i am trying to find a way of having information in a more structured way for parents to understand the system of special educational needs and how to get the help their child needs. i am going to look at everything on your website in more detail but in the meantime, do you think this is possible and if so, can you help me start. It just seems so much confusion in what you can get or not get, what is available,etc.

    smita

    • Tania Tirraoro

      Hi Smita
      I have a paperback and Kindle book that details how to get started with a statement and you can find more information on the Contact a Family site as well
      Tania

  • Janine

    I just wanted to say what a great website,my little boy starts school this year. He is very behind in his speech and Early years have recommended for him to be statemented. Speech and language have finally agreed to back early years and myself in wanting this for my little boy. Still a long road I know! He was born at 26 wks and has had numerous issues with bronchial and tummy problems/feeding and food sensitivities.

    I will be ordering your book to help me along my way.

    Regards

    Janine

    • Tania Tirraoro

      Hi Janine
      Good luck to you, I’m sure you won’t have any problems with the statement as he is such a young age. Just make sure it says everything it needs to say (my book will help with this). Depending on where you live, you may be able to be part of a pathfinder trial (there are 31 local authorities)
      When he gets a statement it will be changed in due course to an EHCP when the new system comes in, in 2014. Be informed and be your boy’s advocate. To do this, you need to take care of yourself – do not put your own needs and health last, but equal.
      Best wishes to you
      Tania

  • Hi!

    I’m trying to use the contact form, however an error message keeps popping up when I press send!

    I’m a freelance journalist based in London working on a series of stories about children with disabilities/special needs in the UK. This is part of my final master’s project and parts of it will be published for an NGO called Safe World for Women. The organisation focuses on women and children’s rights.

    Hayley Goleniowska from Down Side Up suggested I contact you concerning the Children and Families Bill and SEN reforms. If you’re interested in talking to me, I prefer to do an in-person interview, however, I can also via phone or Skype. My deadline is July 29.

    Looking forward to hearing from you!

    Best,
    Kulsoom

  • Melanie

    Tania and Debs – I am new to the SNJ site but wanted to tell you that it is a brilliant resource for parents! – thank you SO MUCH for all the work that has gone into making this site very easy to understand and VERY VERY helpful! I have a 15YO son with ASD and feel very scared about all the upcoming changes. It’s wonderful knowing that you guys are out there!

    • Hi Melanie, thanks for your kind words. If you haven’t already, why not sign up on the top left of the site for new posts to be emailed to you, so you know when something new is out? I have a 14.5 year old and a 16 year old with ASD, so I know what you’re going through!