About Tania

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