Is there anything we can do to help Maria's development?

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.

Will our daughter ever learn to speak?

Ladies-in-waiting

The big question we all asked when Maria was being assessed for her Statement of Educational Needs (SEN) was: would she ever learn to speak? She was four years old and mainly using a mixture of body language, Makaton and babbling to communicate. Her total expressive vocabulary was less than ten words, even though her receptive vocabulary appeared normal at around 2000 words. Being able to speak less than 1% of the words she knew meant that Maria was caught in a communication trap. I can only imagine the sense of frustration she must have felt. From Cathy A Stevens (2011) paper I knew that 56% of RTS adults weren't conversational; of these 17% used signing, so there was a significant chance that Maria might end up using sign language in adult life. 

I raised this issue with Maria's Educational Psychologist (EP) who, despite having no professional experience of RTS, felt that Maria would eventually speak given her current drive to communicate and recommended Makaton in the meantime. I said okay but - recalling the statistics in Stevens paper - wasn't so sure that she would speak. I said that Makaton is fine up to the age of six but that Makaton wasn't actually a language and if Maria still wasn't speaking by that age then she should be taught a language other than English to express herself with; clearly this should be a sign language and since we live in the UK then it must be British Sign Language (BSL). 

Our Local Education Authority (LEA) wasn't prepared to offer Maria BSL as part of her school curriculum and the 'local' BSL school in London only accepted deaf children. And so I reached my first impasse with the LEA; it was to be Makaton or nothing at school. The opinion of the EP was final and parents had no influence on their judgement when drawing-up a final SEN. I couldn't argue because Maria was still only four years old and two years from my rather arbitrary six year mark. I'd chosen 'six' because I couldn't imagine going through life much later than that without being able to fully express myself.  

Coming back to Maria, I found that regardless of the communication medium, she seemed unable or unwilling to express herself. We tried a 'speech' system approach and a 'non-speech' system approach, namely Makaton signing and the Augmentative and Alternative Communication (AAC) iPad application Proloquo2go. Maria learnt to sign Makaton very well but failed to use it to express herself. Regarding Proloquo2go, she only ever used it once to express a need; the rest of the time she played with it, listening to the word associated with each symbol. I wondered if she was ever going to stop throwing temper tantrums and learn to use these tools for self expression. 

Maria is now five and since starting reception class in her new 'special' school she has acquired a larger spoken vocabulary. She regularly surprises us with new words we hadn't heard before. It can be very difficult to understand many of these words because of her articulation (aggravated by glue ear which affects the hearing of sibilant sounds; sure enough, Maria has trouble articulating 's' sounds) so it remains to be seen if her speech develops to become fully intelligible. 

Since the age of two Maria has communicated by getting excited and babbling. Since the age of three she's included some Makaton signs. Since the age of five she's included some English words. Currently we're trying to encourage Maria to verbalise (speak) her vocalisations (babbling) by interrupting the babbling and asking her to 'say' something. We tell her that we don't understand and remind her to use words instead of babbling. It's a slow process but it seems effective. 

More recently she's started to create some spontaneous sentences. The longest we've heard so far is a five-words, although she typically uses only two or three words. For example: 'Good morning', 'Maria beautiful', 'Maria naughty girl', 'Hi how are you' and 'Mummy tidy up bed room'. I'd estimate that Maria uses no more than 30 words spontaneously (without prompting). As a five year old she probably knows around 2500 words, meaning she's using 1.2% of her vocabulary to express herself with, so I believe she's still caught in a communication trap, especially when I compare her language abilities with three year old Isabella.

Looking back when Maria was three, I tried teaching her some Makaton signs. She picked up the first ten signs I taught her in less than 30 minutes. I was both surprised and delighted. I realised how desperate Maria was to express herself and how much her articulation and speech processing was holding her back.

When she was three years and five months old I bought her the first of the Sing & Sign DVDs (compatible with Makaton and Signalong). She loved it and almost wore it out through watching it hundreds of times. After a while she knew the DVD so well that she could turn her back to the TV and perform all the signs and gestures in sync with the picture. 

Maria progressed to Makaton by watching the children's TV show Something Special on the BBC CBeebies channel. The lack of Makaton books got me looking at BSL books instead. Before long Maria and Isabella were both singing and signing songs in BSL as well as praying in BSL before they went to bed. 

More recently I decided to learn BSL properly and bought some BSL videos which I placed on our two iPads. I soon found both girls watching these, which surprised me because I expected they'd want to watch the more entertaining Sing & Sign videos instead. It's difficult to say if their motivation is to watch something new or to learn something new (probably both). 

Isabella watches these videos but doesn't sign now that she can talk. Most of the time Maria doesn't sign either when watching the videos but this doesn't mean she's not learning the signs. Ask her any of the signs afterwards and she'll demonstrate them to you; so her short-term memory seems to be pretty intact for this type of task. 

The result of all this apparently passive watching is that Maria knows more Makaton and BSL than Joan and me. At her most stunning, Maria has twice performed a simultaneous translation into Makaton as we read her bedtime story book; she found it amusing but we found it amazing!
  
As an aside, a few weeks ago it was Easter and we were about to give Maria and Isabella a chocolate Easter egg. Seizing the opportunity to sign with Maria (an opportunity I often forget), I recalled the Makaton for 'chocolate' but realised I didn't know the sign for 'egg'. I asked Maria to show me and she signed something that neither Joan nor I recognised. We looked at one another and wondered if she was bluffing. I checked in our Makaton and BSL dictionaries and sure enough she was absolutely right; hers was the Makaton sign. Curiously the BSL sign for 'egg' is similar but not identical, which is strange because Makaton claims to be based on BSL but more on that topic in a coming post. 

One day I wondered to myself: what if IQ tests were issued in sign language. What IQ would I have in a world that judged me on my ability to communicate through manual signing?