The first thing we asked ourselves was 'what can we do to help?' My initial reaction was to find out as much as possible about RTS. It didn't take long. A months research just about covered everything on the Internet because there isn't much out there on RTS. In order to get some kind of answers I had to be content with literature on more common diseases, like Down Syndrome (DS). A case in point is that of reading; there are no books on teaching children with RTS to read, so I bought 'Teaching Reading to Children with Down Syndrome' by Patricia Logan Oelwein. To encourage Maria to speak I bought books from The Hanen Program ('It Takes Two to Talk' and 'You Make The Difference'). To help Maria with articulation I bought 'Cued Articulation' by Jane Passy. And just in case Maria never became fully verbal then I bought 'Literacy Skill Development' by Leslie Broun & Patricia Oelwein. Trying to find time to read all these books, never mind putting them into practice when you have a full-time job, is another matter. Fortunately, Maria started a Special School last September and they already use the techniques covered by some of these books.
Trying to be the teacher as well as the parent is not really something I find I have time for during the week. I leave for work at 7 am and return home at around 6:30 pm, giving me an hour to eat dinner with the family before getting the children ready for bed; they're usually asleep by 8:30 pm. To compensate, I try to do something with the family at the weekends, but this will become more complicated when Joan returns to work from maternity leave. So I've resigned myself to dealing with the administrative issues, leaving Joan to handle most of Maria's teaching and clinical sessions.
If I can't do the work myself then I can at least coordinate with those who do, which includes Maria's clinical appointments, school meetings and the Local Education Authority (LEA). Much of my time is spent making sure the school implements what the LEA has stated in Maria's Statement of Educational Needs (SEN). Periodically the SEN is reviewed by the LEA, in which case I need to ensure the appropriate 'experts' report on Maria's progress, ideally stating in their report the number of hours of treatment Maria needs in any given area, such as Speech & Language Therapy or Occupational Therapy. Currently I'm trying to introduce Music Therapy into Maria's school activities by persuading the LEA to pay for the sessions.
I found an amazing resource about a year ago on a US website called Unique which offered an entire school curriculum for disabled children. At a cost of around £300 per year it provides everything you need to know in order to teach your child at home. I particularly like the quantitative method of assessing progress although I can't say I've actually used the website much since Maria started at Special School. They do similar stuff in the UK but use a qualitative method of assessment which, in my view, is never going to be as objective. Maybe the schools know something that I don't. If you are interested in the course then be aware that the teaching material assumes an intimate knowledge of American culture; I'm from the UK and I was surprised how much I didn't know. In a curious way, I found this made the course more interesting for me!
Maria's development is obviously an ongoing process and we're going to spend the rest of our lives helping her to reach her maximum potential.