What are Maria's educational needs?

Teacher Maria

How do you work out the educational needs of a child with RTS? With so few 'experts' and specialists of RTS, what at the chances we're getting the right advice?

That's the $64,000 question. The fact is that each child with RTS (or any other syndrome for that matter) is a unique person with unique challenges. Experts and school teachers are very good at recognising the common symptoms and applying remedies. Quite often techniques that work for one syndrome can be applied to another. 

For example, many syndromes result in speech delay.  The usual solution is to use several simultaneous methods of expressive communication: a manual system like Makaton together with a visual system like PECS and an oral system like Cued Articulation with speech therapy. 

When this approach is extended even further to include areas like music, touch and body movement then the system is called Total Communication. The aim is to try every major method of expression to see which works best for that individual. Bear in mind that different solutions may be dominant at different stages of development. 

For example, Maria used a manual system at the age of three but is progressing to an oral system now she is five. She uses visual systems mainly at school for organising her day, but for other children the visual system may be a vital entry point into communication.

Getting back to the question of Maria's educational needs. These were determined by a group of 'experts' specialising in different fields, who gave their opinion on Maria's current and future state. They made recommendations in their reports which fed into Maria's Special Educational Needs (SEN) statement, which has the status of a legal document, compeling the Local Education Authority (LEA) to provide the services that Maria needs at school. 

For example, the first expert was a geneticist, who confirmed Maria's diagnosis of RTS. The next was the educational psychologist who assessed Maria's mental state  and concluded she was delayed in specific areas, recommending, among other things, using Makaton; Maria was almost four years old and was about to start school. Then came the speech & language therapist with her report. Then the occupational therapist. Then the paediatrician who collated all of Maria's medical reports from other specialists, namely: the orthodontist (dentist), the gastroenterologist (throat and stomach), the ophthalmologist (eyesight), the audiologist (hearing), the kidney ultrasound specialist, the skin & eczema consultant, the cardiologist, the clinical imaging team (to check Maria's swallowing and gagging) and the orthopaedics consultant. Some of these appointments were attended several times, and that's not including all the times we attended the General Practitioner's (GP) clinic in order to be referred to these specialists!

All the reports fed into Maria's SEN statement, compiled initially by the Head of SEN at the LEA. He worked out what provisions Maria needed and sent us a copy of the first draft for approval. This is a crucial stage. Don't agree to this draft if you're not happy with the provisions. Normally the document will reflect the opinions of the experts, so unless you can find an expert to support your views then you'll find it difficult to simply insert your own comments in the crucial parts 2 and 3 of the Statement. We met up with the Head of SEN to discuss a few issues, particularly that of teaching Maria BSL rather than Makaton, but he wasn't sympathetic to our views and basically told us that BSL is only provided for children with severe hearing problems. Finally we agree some revisions to the statement and soon after received a copy of the Final Statement of Special Educational Needs. That was to become the document that would define what help Maria would get at school.   

Of course the LEA is strapped for cash and won't give a child anything it doesn't deem essential. By essential they mean whatever the experts recommend. It's not that long ago that speech & language therapy (SALT) was viewed by them as unnecessary, After parents fought and won that battle, it then became the turn of the occupational therapist (OT) to establish their place. Now that both these services are more established (although Maria's Head Teacher told me the LEA only gives OT to autistic children at her school) there are other services that still need wide acceptance by the LEA; one is music therapy. Only in exceptional circumstances does the LEA fund this hocus-pocus treatment. In fact, the last time I spoke to the Head of SEN he told me that music therapy for Maria 'is not an educational need'. What did he mean by that? When I asked him, he simply dodged the question. He wasn't going to educate me sufficiently to allow me to challenge his view. I also knew that I would need a fairly strong argument to challenge his view at a Tribunal. 

But what did he mean by 'not an educational need'? My guess is he meant that if it's not in Part 3 of the Statement of SEN then, by definition, it's not an educational need. The way to get it into Part 3 is to get an expert to make a recommendation that is accepted in Part 2 and then translated into an educational need in Part 3. This 'translation' is initially done by the Head of SEN but can be challenged at a Tribunal. Usually it doesn't get to that stage because the LEA thinks hard before letting it get that far. So, being a determined and switched-on parent is the only way to help your child. If you have the expert backup then don't take no for an answer. 

Joan and I are the only true advocates of Maria. The school and the LEA have their own agendas; too often constrained by finances, their motives should always be questioned by parents. 

Like all concerned parents, we observe Maria and take note of her needs and interests. This knowledge can be used to help motivate Maria to learn new things. Maria loves to dance and sing; this enthusiasm on Maria's part can be used to help develop her speech, her gross and fine motor skills and her attention span.