Sunday, 10 June 2018

UK RTS Support Group Conference on 9th June 2018

Maria and Raoul Henneham in June 2018
We've just returned from a really wonderful RTS one-day conference in the UK by the RTS Support Group. It was very well attended and included presentations by leading academic doctors, medical doctors and lawyers. Chris Oliver, Jane Waite and Hayley Crawford offered fascinating and  informative presentations on the clinical (behavioural) psychology of RTS. Adam Shaw spoke of the many medical complications of RTS and Raoul Hennekam summarised the genetics of RTS and gave some exciting news about a Fragile X trial starting in June 2018. What's this got to do with RTS? Let me explain ...

The CREB protein is used to help gene transcription and expression in the human body. RTS people have a genetic defect that prevents the CREB protein from being manufactured is sufficient quantities. You probably know that already.

In 2003 a paper was published claiming that an inhibitor of phosphodiesterase 4 (PDE4) called rolipram helped to cure mice with Rubinstein-Taybi Syndrome (RTS). They suggested this drug could be used to treat RTS people. The medical community was sceptical until another paper, published in 2017, made a similar claim for mice with Fragile-X Syndrome (FXS) using PDE4D (a type of PDE4 inhibitor) called BPN14770. In both cases, the amount of an important signalling molecule called cAMP is regulated by these inhibitors, which in turn regulates the amount of the CREB protein produced and hence gene expression in the body.

So, in short, we have a way to compensate for the lack of CREB protein produced and if the trial for FXS is successful then it might be used to help people with RTS.

Raoul was excited by this new development, which could help RTS patients in several areas of mental processing and behaviour. However, he warned that those parts of the brain that are physically underdeveloped may not benefit from such treatment. We wait with bated breath!

Other speakers included Gavin Pride-Williams on wills, trusts, probate and tax planning. Laxmi Patel spoke about Education, Health and Care (EHC) Plans, which, unfortunately, didn't apply to families like us living in Wales. Wales still uses the old SEN Statement. But after hearing what Laxmi said about EHC Plans, there didn't seem to be much difference between these and the old SEN Statements.

Elizabeth Perry gave an thought-provoking presentation on the legal aspects of caring for an RTS person. This included a look at community care law and mental capacity, which related to my concerns about what happens if Maria wants further education or to get married.

In the evening we had dinner. Following desert, Jane Waite and Hayley Crawford showed us a new RTS video they had just launched on the FIND website. The evening ended with a disco, games and other activities. In short, we had a great time and I met many new RTS families.

If only every country could have this kind of wonderful RTS support. My hope is that those visitors from other countries who attend our events are inspired to form their own RTS support groups.

POSTSCRIPT AND WARNING: please note that rolipram is poisonous to humans.

Tuesday, 5 December 2017

Special Educational Needs Tribunal

In my previous post I talked about Maria's Special Educational Needs Statement and the way my Local Education Authority (LEA) had reduced Maria's speech and language therapy and occupation therapy provisions without making us aware and discussing it. Once I realised what was going on then I started to ask questions, but they had no answers. My frustration with the LEA generated the energy I needed to spur me into action. I hadn't realised what they were doing until it was too late and I kicked myself for not reading all those LEA letters and reports more carefully. Never again!

It all started two years ago when Maria was aged 8. The LEA Educational Psychologist (EP)  conducted some tests (WISC IV) in August 2016 and reported that Maria's cognitive (or reasoning) abilities were "extremely low". Then in October 2016 an LEA Speech and Language Therapist (SALT) conducted some tests (CELF-4) on Maria and reported that her 'receptive and expressive language abilities fall in the "Extremely Low range of ability" in relation to her chronological age.' The SALT noted that her assessment results were in line with those of the EP. Her conclusion was that Maria was having difficulties accessing the National Curriculum and that she would benefit from "a programme of activities delivered by the school and reviewed twice a year, rather than direct blocks of therapy".

To paraphrase, the EP concluded that Maria is an imbecile (a medical term used in the past to mean someone with moderate to severe learning difficulties) and the SALT agreed, advising the LEA they shouldn't waste resources trying to teach Maria anything but should just pay lip service to addressing her needs. So, instead of trying harder to help Maria improve her language abilities, they just gave up, believeing that since Maria's cognitive abilities were so low then there was little they could do to improve matters. The SALT wrote that Maria will "benefit" from such a programme of activities. She felt that Maria would actually benefit if the SALT wasn't there!

This is what I call "giving up". It's based on the philosophy that you can't do anything to improve a persons cognitive abilities because these are hardwired at birth and cannot be changed. It's the nature-nurture argument. Your intelligence is determined by your genes and your environment has little if any influence.

Some of you will have read my earlier posts on the new science of epigenetics, which tells us that the expression (activation) of our  genes is influenced by our environment and our experiences. So the environment has a significant influence on our bodies. It seems that modern psychology needs to catch up with modern genetics. We are not our genes; we are the expression of our genes; and that expression is influenced by our environment and our experiences. Our experts need updating and retraining to recognise their own implicit biases.

Getting back to my story: nobody at the LEA found the SALTs conclusions unusual or unfair and so Maria's SALT provision was reduced, without direct discussion with the parents, and then set in stone in her new Statement. A year later the same thing happened to Maria's OT provision, which was reduced from blocks to termly reviews. Once again, the LEA considered this to be in Maria's best interests and so her Statement was changed without question and without discussing it with the parents.

The school system didn't seem to be working either. I witnessed Maria making the same mistakes writing letters of the alphabet for several years. Clearly this couldn't happen if she was being taught correctly, tested, monitored and reviewed each year by her teachers and other experts.

Now you may be thinking at this point: well, if a child is "uneducable" then what's the point trying to teach the child anything. Well, that's a bit of a self-fulfilling prophecy. As it happens it's not true of Maria. Maria is not uneducable. She's learnt a lot in the past two years and she continues to do so. Teaching her is not a waste of anyones time. She's started to read books and write sentences. I've personally managed to help correct some of her alphabet letters in as little as thirty minutes. She can do up her zip and buttons. She can get herself ready for school in the morning with only prompting to keep her on track. She's starting to do basic arithmetic too. So there's no reason to give up on her at this stage in her life. What kind of system would do that to a child anyway?

I tried asking the LEA why Maria's SALT provision had been reduced without my knowledge but I got obstructive and unhelpful replies. The more questions I asked, the more concerned I became.

I spoke to several SALTs who each told me that they didn't concern themselves with the child's reading or writing abilities while employed by LEAs. So a Speech and Language Therapist isn't interested in writing or reading! The Oxford dictionary defines "language" as a "method of human communication, either spoken or written". So why ignore the child's writing abilities? Why aren't they testing Maria's ability to read and write - using standardised tests?

And why was Maria's Occupational Therapy being reduced from weekly sessions to termly reviews? Had Maria mastered writing to such an extent that she no longer needed the input of an OT? If so then why was she having trouble writing "a", "8" and "2"?  And was Maria's attention deficit such that she no longer needed the input of an OT? If so then why was she making such slow progress?  Even I could see there was a problem with their policy (you could hardly call it "rationale") of reduction.

None of this made sense. The only explanation was that the LEA had either given up on Maria and concluded that she had no needs because she had such poor cognitive abilities. It takes a pretty heartless system to come to that conclusion for an eight year old child.

I was faced with a choice: do I fight the SALT department who wrote Maria's assessement and try to get them to change their conclusions, or do I just request a "full reassessement" of her Statement of Special Educationa Needs? It was about four years since Maria was last fully assessed and the original reports from the Educational Psychologist (EP) and others were looking a bit dated, so I requested a full reassessement, thinking and hoping that this would trigger a reassessment of Maria's SALT and OT needs and restore her original provision of weekly blocks of therapy.

I requested a Clinical Psychology report from CEREBRA, the specialist RTS research group in Birmingham University who know Maria quite well. This was submitted to the LEA SEN panel for assessement together with our own Parental Views. In the end, a new SEN Statement was issued but with the same dumbed down provisions for SALT and OT as in the previous Statement. I was not surprised. The LEA had already demonstrated it simply wasn't listening to parental concerns.

But how did they manage to get the SALT and OT consultants to turn a blind eye to Maria's true needs? Surely such professionals wouldn't do this to a disabled child who actually needed the services? Somehow, the LEA managed to do it and I have been intrigued how this happens.

I have spoken to independent EP, OT and SALT professionals who tell me that when they are employed by LEA's then they don't give comprehensive reports on the child; the reports are limited in scope. Some of these professionals told me they are not requested to give full reports by the LEA when contracted to work for them; this would be a very costly business. This can only result in an incomplete picture of the child's needs.

Because the LEA contracts the EP, OT and SALT then they get to specify what type of report they want. My guess is that a symbiotic relationship develops between the LEA and these professionals;  each side benefits by giving the other what it needs. (It's nice to know that somebody's needs are being met). The only way to break this cosy cycle is for parents to pay for their own EP, SALT and OT reports from independent professionals, where the parent is the customer and can demand a more complete and comprehensive picture of the child's needs. And believe me, once you have seen the difference between an LEA SALT report and an independent SALT report then you won't want to trust the LEA reports.

These reports are not cheap. Here's what we paid at 2018 prices:
  • £2200 for the independent Educational Psychologists (EP) report 
  • £800 for the independent Occupational Therapists (OT) report
  • £500 for the independent Speech and Language Therapists (SALT) report
  • £1800 for the SEN solicitor to write an Appeal for the Tribunal.
That's £5300 in total. If you want the SEN solicitor to represent you at Tribunal then you can add another £2500 to that figure; and you'd normally take your independent EP as an expert witness for a further £1000. This £8000 cost puts a strain on most family budgets. The most important thing for us was to get independent reports from the EP, OT and SALT. Without those, we wouldn't know Maria's true needs.

It's essential to have those reports if you want what's best for your child. There's little point going to a Tribunal unless you get the reports done, otherwise the following will probably happen:


You're at the Tribunal and the Panel ask you:

  1. what are the relevant facts, 
  2. what do you think should be done for your child, 
  3. what do you want the Tribunal to do for your child. 

You can give your own opinions but if you're not a certified EP, SALT or OT then the Tribunal will politely ignore your views on these matters and examine the available facts. At this point, unless you've got your own independent EP, SALT and OT Tribunal Reports, the Tribunal will have no choice but to look at the LEA reports you are appealing against! 

The Tribunal judges are more expert in education and law than psychology and physiology and they certainly can't conduct an assessement of your child in the Tribunal itself, so you can't rely on them to work out your child's current and future needs without outside help. All they can do is read the reports and recommendations of the relevant experts and come to a decision based on all the evidence. If you supply them with your own independent, comprehensive and recent reports, containing clear recommendations (an essential characteristic of Tribunal reports), then you're much more likely to win your case.


Coming back to Maria's case: we decided to take the LEA to Tribunal. We paid the solicitor to write an initial Appeal statement. We paid for independent EP, SALT and OT reports and submitted all these to the Tribunal together with a Clinical Psychologists (CP) report by CEREBRA.

As soon as the Tribunal informed the LEA that we were launching an Appeal, they were obliged to contact us and to try to resolve the situation. Their way of doing this was to sit down with us, reassure us that they had thoroughly reviewed all relevant letters and documents and had learnt important lessons (I wondered if the lessons would be applied to every disabled child in the county. Probably not! That would be too expensive. They would only be applied to those children whose parents took them to Tribunal). They tried to reassure us that they would now do everything necessary to come to a mutually beneficial and agreed course of action. They agreed to accept our own independent reports and consider these in conjunction with their own SALT, EP and OT reports. They promised us everything we could have possibly wanted in the verbal meeting we had with them. Joan and I were very positive about the future when we left the LEA office that afternoon.

But following that meeting there was no letter or email confirming our discusson. This seemed a familiar tactic. I realised that without anything in writing our meeting had no legal status. We were back to square one. Were we to trust the very same people who had ignored us and deprived Maria for the past year? Why should we trust them?

Without a Tribunal order instructing the LEA what to do and when to do it then we might be falling into yet another trap. We had nothing in writing to say what they promised us. They didn't back up the meeting with written confirmation of what we discussed. I've experienced this in the University sector; Heads of department making all sorts of verbal promises and then denying them, or saying you misunderstood what was discussed.

I thought that since we were getting all the reports done anyway, why not just submit them to the Tribunal, attend the hearing and wait for the Tribunal to instruct the LEA, in writing, what they must do. That way it's all official and there's no informal discussion that can be misunderstood. So we decided we would go to Tribunal. Besides, I still had some unanswered questions I wanted to put to the Tribunal about the reasons why the LEA had reduced Maria's provisions. I felt these reasons should come out into the open.

We had further meetings with the LEA and their EP, SALT and OT staff to ask a few more questions about Maria's proposed provisions. The LEA EP tried to put-down our independent EP by saying he was not well thought of and the senior LEA SALT criticised the experience of our own independent SALT.  I said nothing because I knew that our EP was one of the best and most experienced people in the business; and I wanted to tell the LEA SALT that if they are so experienced then why didn't they spot all the needs stated in our independent SALT report?

These meetings gave us the opportunity to question the LEA about their reasons for reducing Maria's SALT and OT provisions. I needed to understand why they'd allowed it to happen. The LEA Manager told us she wasn't able to ask the original SALT because she'd left, so she tried asked the existing staff but couldn't come up with a reason. I knew they would never admit either giving up on Maria or to cost-cutting and I agreed with her that the Tribunal would not be interested in answering historical questions of this type.

So, in the end Joan and I decided to let the LEA off the hook and cancel the Tribunal, just three days before the date of the hearing. As it happens the Tribunal would never have take place because it was due to be held on Friday, 2nd March 2018. That was the day the whole country closed down because of snow storms!

Since then I've been working on updating Maria's Statement with the LEA. We are bouncing this document between us and making the necessary changes. So far, everything looks positive and the LEA are sticking to what we agreed. But the fact still remains that their experts have deprived Maria of two years of intensive therapy that can never be replaced.

Wednesday, 29 November 2017

Statement of Special Educational Needs

Maria in school uniform (2015)
Those of you who have Education, Health and Care (EHC) plans in England will have fond memories of the Statement of Special Educational Needs (SOSEN); but in Wales we still have them - for now anyway. In fact, just after we left England for Wales our Welsh Local Education Authority (LEA) had already been made aware of Maria and was negotiating with us which school we might choose. They didn't come out and say to us that Special Schools in Wales are only for chldren with severe learning needs. At that time, Maria was classed as having moderate learning needs and so the Welsh LEA recommened putting her into a mainstream school with an Additional Learning Unit (ALU).

We visited the local Special School, which is only five minutes drive from our home, but the Head Teacher made it clear that it would be very difficult for her to get in and she would have to wait until next year to apply.

So, we were pretty much pushed into accepting Maria into a large mainstream school with a large ALU of seven classes. Unlike the English Special School, this Welsh school didn't have a team of in-house Speech and Language Therapists (SALT). In fact, her new Welsh school told us that they had not been able to get hold of one for years and, by a stroke of luck, this year the LEA had managed to find one and she was now busy doing assessements. When I pointed out that Maria also had Occupational Therapy (OT) on her statement then the school SENCO shrugged her shoulders (metaphorically) and told us they OTs were very difficult to find in Wales but that they had an in-house psysiotherapist who would help. Six months later and still Maria's OT provision hadn't been met.

In the meantime, the English format of Maria's Special Educational Needs Statement did not conform to the Welsh standards, so we were busy copying and pasting the English format into Welsh. And that should have been all that it was. The first draft looked okay but had a few odd changes which I questioned. They agreed with me and changed it into a second draft. After a few more comments a third draft arrived in the post and I assumed they had just implemented the small changes I had suggested. Everything should have been the same as the English version: Maria should have blocks of SALT sessions and see the SALT each week. The same for OT: blocks of OT and see an OT each week - just like she was doing in her Special School in England. Now all that was needed was an OT.

The NHS OT lagged by many months, so Maria didn't see an OT for six months. I got the forms to complain to the Obudsman about the LEA not providing the OT service that is required by law in Maria's Statement. But before I could complete the forms I got a phone call from the LEA telling me they had just hired their own "Educational OT", and Maria was top of the list to see him. I wondered if I should ask for Maria to have two sessions per week to make up for the lost six months, but I didn't. I thought to myself that at least they had made the effort to hire somebody and I shouldn't punish them by complaining to the Ombusdman or giving them a hard time.

And so everything seemed to be okay for a couple of months until I got a phone call from Maria's SALT telling me it was time for her review. I was confused. Why was Maria having a review at this time of year? She has weekly sessions with her SALT. Why does she need a review now?

Er no, she said. Maria's provision on her Special Educational Needs Statement had been changed from blocks of weekly sessions to two reviews per year. My heart starting to beat faster and I was speechless for a moment. WHAT!!!

After I calmed down I pointed out that nobody had discussed this with me. The previous SALT had not discussed making any changes to Maria's provision. I was incredulous and felt sure there had been a mistake. After the phone conversation - in which I asked the new SALT to go through Maria's records to see what reason was given for reducing Maria's SALT provision to two reviews per year by the previous SALT - I rushed off the check Maria's current SEN Statement.

Remember that third draft I mentioned? The one in which only small, routine changes had been made and so I didn't bother to check it. Well, in the covering letter it said that Maria's SALT provision was being reduced to two per year; and when I checked the SEN Statement itself, sure enough it had. I was LIVID - both with them and with myself for not checking the draft properly and for trusting them. Those sneaky ********! The two month period I had to complain to a Tribunal about the changes had passed and there was nothing I could do now.

I had spoken to the previous SALT many times over the phone. She hadn't told me anything about reducing Maria's provision. What was going on? I began to smell a rat. Sure enough, when the new SALT phoned me a day or so later, she told me that she could find nothing in Maria's notes that explained why her previous SALT had reduced her provision. I tried to convince the new SALT to put Maria back on her orginal provision; she was nice but vague and uncommited to any such action.

So my mind turned to what to do next ...

Tuesday, 28 November 2017

Family pressures with three children

When we lived in London, I was working as a Database Administrator near Oxford, which invloved a  daily drive of 56 miles each way along the M4 motorway; it took me on average one hour and ten minutes to get to work. [Eddy's Universal Law of Commuting in London: it takes one hour and fifteeen minutes to commute to work]. Joan on the other hand worked locally at an NHS Hospital as a A&E Staff Nurse. It took her about 20 minutes to get to work (that's not what I call commuting).

Joan would work night shifts, starting at 7 pm until 7.30 am the following day. I would work day shifts, starting at 9.30 am and finishing at 5 pm (flexible working hours).  Joan would return from work and I would leave; when I returned from work, we would eat for an hour and then she would leave. This system worked while we had our first child, Maria, but the system started to strain when we had Isabella two years later.

Maria, who was two years and six months, started sleeping in a seperate room while Isabella, who was six months old, would be in a cot in our bedroom. I would look after her while Joan was working her night shifts. Which meant that I wasn't getting much sleep with all the night time feeding, but I would still be driving the 56 miles each way to and from work. Sometimes, on my return journey I would find myself falling asleep at the wheel. Fortunately nothing happened but that was sheer luck.

At about this time, Maria started nursery. So Joan would take her to the nursery (about a mile away) in a double-buggy, with Isabella.

Fast-forward two years when John is born. Joan takes six months maternity leave - breast feeding John for four months (Isabella was two months and Maria was only one month, owing to her poor sucking reflex). Things start to get complicated.

During Joan's maternity leave the hospital changed it's policy for staff: all Staff Nurses now had to work both day and night shifts - in the interest of staff "fairness". Up to now, each nurse negotiated her schedule to suit her personal circumstances. Now the system was not only inflexible but positively hostile to nurses with families. Several nursing staff who had families had little choice but to leave; Joan was one. She was asked to work two day shifts during the week but that would have been impossible in our circumstances.

We considered the logistics of how to mange our three young children: Maria attended a Special school; Isabella attended a nursery (with different opening and closing times) and John was still at home. We were placed in an impossible situation and with an unsolvable problem. Joan and I didn't have any relations who could help us out for free.

I sat down and costed the situation, using child minders to collect the children from school or nursery and keep then until I get home from work (assuming I didn't get stuck in a two hour traffic jam). It worked out at over £1000 in child-minding fees per month during school holidays. We knew we didn't have that kind of spare money each month to spend on these fees, even if we could work out the logistics of how to make it work.

To make matters worse, the hospital showed no sympathy towards Joan's situation (so much for NHS family friendly policies) and gave her six months after returning from maternity leave to conform to the new system of two day shifts per week. If she failed to conform to this policy then they would take disciplinary action, which would go down on her Human Resources record for all future NHS employers to see. We knew we had to act fast but what should we do?

Well, it was obvious that one of us would have to stop working - but that would cause an enormous financial strain. Our (fixed rate) mortgage was relatively cheap at £935 per month, when the going rate to rent a similar house would cost you £1200 per month in that part of London. But with our bills amounting to at least £1300 per month then it would be a real struggle to bring up our family on a single salary. Joan didn't want to stop working (she loves A&E) and I was no longer enjoying my job at STFC; so I had an idea.

I had lived in London from the age of 19 when I came down from Bradford to study at University. During those 37 years I had lived in five properties that I "owned". So I'd accumulated a resonable amount of equity in our Hounslow home. One solution was to sell up and move to a cheaper part of Britain. I could give up work and look after the kids (since I was the only driver in our family and was looking forward to retirement and looking after the kids) and Joan could continue working as an A&E nurse.

Joan said she wanted to be within easy reach of her friends in London, so we got a map and looked at the M4 motorway. It stopped in South Wales, so we looked for houses between Newport and Swansea at the weekends, staying in a Bridgend Travelodge for just £35 a night for a family room. I was looking for a house near a Special School and the local train station - so Joan could get to work.

House prices were extremely cheap by London standards. In the end, we found a five bedroom Victorian house with two large gardens and a beautiful view of the Neath valley for just £184,000; that was the cost of a one-bedroom starter flat in Hounslow.

So we moved to Neath in South Wales on 8th May 2014 and this is where we now live. The plan has worked and we have a much less stressful life. As an added bonus, we discoverd some of the largest sandy beeches we have ever seen just next door to Neath. However, just like in the Lake District, Neath gets a lot of rain because of the hills, but we have some beautiful green valleys!

I am voluntarily retired, looking after the kids and our home. I haven't missed my old job  for one minute and now I use my computing skils to help organisations like Joan's local Catholic Church, my Quaker Meeting and the RTS Support Group in the UK. I also started a local filmmaking club called Neath Filmmakers.

Joan does Agency work for the NHS around the whole of South Wales. Agency work gives her the flexibility she craved for in the NHS. She phones up early on Monday morning and tells the Agencies which days she's available for work; more often than not she gets those days. The pay is better too but some of this extra money must go towards a pension.

Some of her Filipino friends in London were intrigued by what we did and followed us to South Wales. We all have a much better lifestyle as a consequence.

The moral of the story is this: when life gets out of control, be brave and take those big decisions in favour of your family. In our case we are much happier and stress free following our decision to move, but you need to make the decisions that suit your own circumstances; and it pays to think out of the box sometimes.

Wales in not without it's problems. The NHS is very short of money and it takes twice as long to be seen by a consultant than in London. This has an impact of all services, including those for children with special needs. This is the topic of my next post: Maria's Special Educational Needs Statement.

Maria in November 2017

Four years have passed and I haven't written in this blog. A lot has happened since then. Let's give you an update. This will give you some idea of how Maria has progressed since 2013, when I was concerned about Maria's communication (she was five years old at that time) and thinking about signing as a long-term solution for Maria if she never learnt to speak properly.

Well, the good news is she has learnt to speak, not fluently. Here English is broken up into short phrases but she can express herself quite well.

What's even more surprising is that in the last year she is starting to show signs of being able to read. She brings home simple reading books from school and can read them to us. Just short simple words but at least she now knows she can read and it gaining confidence. When you consider that Maria has been flicking throught books since the age of two, wanting to read the words, then this is a most welcome development. Like me, she loves her books.

Physically, Maria is a remarkably healthy young girl. She is nine years old and developing physically. When she reaches the age of 11, she will go to a secondary school in Britain. We are busy selecting the best school for her.

In Britain, a child with "special needs" has a Statement of Special Educational Needs. This legal document describes Maria's condition and what help she must have from her school and supporting services (e.g. Speech & Language Therapy, Occupational Therapy). The system in Britain is changing. England has changed the system and no longer has a Statement; they have a new way of doing things that I haven't yet understood. Wales, still uses the old Statement system, which is lucky for me because I know how that particular system works.

I'll tell you more about what has happened in my next posts.

Saturday, 29 June 2013

What about baby signing?

Since we've used Baby Sign Language for Maria, Isabella and no-doubt for John, I'll say a few words about our experience of it here. 

Baby signing is a term that's used to teach pre-verbal children to communicate using signs instead of speech. A typical child can say a few words by the age of 1, has a small vocabulary by the age of 2 and can speak intelligibly by the age of 3. 

Personally I'd try baby signing as early as 9 months. At that age your baby is probably frustrated when it wants milk, food, a hug, the toilet or a nappy change but has no way of letting you know other than crying.

The Baby Sign Language system uses signs based on the native spoken language and uses the same ordering of hand signs as the spoken language. You'd be expected to speak each word as you sign. This way the sign system mimics the spoken language of the child's family and environment.  

Before Maria was formally diagnosed with RTS there was a period from the age of two to three years when I started to think about how to help Maria communicate. Naturally we concentrated on speech but eventually I came across the idea of using signs as a means of expression for Maria. She must have been three years old when I taught her some baby signs and it took her only half an hour to learn about ten signs. These were mostly animal signs since animals always got her excited. Important signs like toilet, milkmore, all gone, where?, bookbiscuit, bed, brush teethbath, pain, sorry and thank you followed soon after. 

Maria was watching everything on the BBC Cbeebies TV channel from the age of one, so she must have watched Something Special. This TV series is designed for children with special needs who are learning Makaton. Thinking about it, maybe she already knew the signs I taught her from watching these programmes. Maybe all that happened when I showed her my signs was to give her 'permission' to use them at home.

When Maria was three years and five months old I bought on Amazon the first of the Sing & Sign DVDs by Sasha Felix. This particular Baby Sign Language system originated from Say it and Sign it (an obscure West Sussex sign system in the UK) but is now compatible with Makaton and Signalong. Maria loved the DVD so much, she almost wore it out by watching it at least a hundred times. Naturally she learnt all the signs and started to use them quite frequently. It soon became her first expressive language, together with babbling (I felt at the time that the babbling probably meant something but I just couldn't figure it out. Looking back, this wasn't very likely since Maria's babbling consisted of just a few different sounds).

Maria is now five years old. To this day Maria uses babbling with spoken English and Makaton signs to express herself. The good news is that spoken English is becoming more prominent and is slowly replacing Makaton. Ask Maria a question nowadays and instead of answering with Makaton, she'll try to say the words in English.

One concern that I had was the fear that learning Baby Sign Language might affect normal language development. Well, in the case of Maria it's impossible to tell but since we taught Isabella to baby sign too then I can only say that there's no discernible effect on her language development; she started to speak as expected. The important thing is that she can understand Maria's signing and even signs for emphasis or for fun. 

But the best thing about signing and speech is that our family is now bilingual. Sign language is an extension of our spoken language and has become part of the family culture. Our rare blend of communication modes is one of the things that unites us as a family. We intersect the cultures of the hearing, the Deaf and the disabled to form a new type of multi-cultural community that's barely recognised by the wider public. 

Sunday, 16 June 2013

Which system should Maria use for signing?

Happy Daddy's Day!
Maria is five years old and English is her first receptive language and Makaton was her first expressive language; but since she started special school this year then things have changed; English is now slowly taking over as Maria's primary expressive language. 

Maria's school report says she uses Makaton a lot to express herself, together with babbling and English words. At home she largely babbles but uses more English words when encouraged, however there isn't much signing at home. That's probably because we don't sign much to Maria whereas her teachers do.

All this indicates that Maria's speech is slowly developing and it looks like spoken English will become her dominant expressive mode; so far Maria's record for the longest sentence is five words. She's got some way to go before she relies solely on English; in the meantime she needs a way to make herself understood, thereby reducing her frustration. So, back to the original question, which I'll rephrase as: which system should Maria use for signing?

Given Maria already understands English then the possible candidates for an expressive language include British English (BEL) and any of the sign systems we saw in the previous post. Indeed the only excluded choice is British Sign Language (BSL), apparently because of BSL grammar. Ironically, BSL is used by mute people yet Maria, who is in effect hearing-mute, is not advised by the 'experts' to use it. This can only be because they believe she is incapable of handling two grammars: English and BSL.

What's the problem with learning two grammars? After all, there are cases of bi-lingual and tri-lingual children with Down Syndrome. Come to  think of it, Maria already understands English and some Tagalog - the official language of the Philippines. 

Common sense dictates that children with developmental delay have enough trouble learning one grammar, let alone two. Although I've never accepted this premise in the past, I would so like Maria to have an expressive language that I'm sorely tempted now.  Common-sense and science don't always mix however, there's evidence that children with Down Syndrome do have difficulty learning grammar, whereas nouns and verbs are much easier master. 

Now, you can interpret this difficulty of learning grammar in two ways: either reduce the number of grammars a child needs to learn or simplify the grammars. Reducing the number of grammars argues in favour of using Makaton and BEL since Makaton grammar is a subset of BEL grammar, meaning the child only learns one grammar. Simplifying the grammars argues in favour of BSL and Basic English since BSL grammar is simpler than Makaton (English) grammar and Basic English grammar is simpler than BEL grammar. Clearly the experts have opted for reducing the number of grammars. 

My personal preference would be to choose a sign system that's based on BSL. Ignoring FS2, CS and CA (they represent letters and sounds instead of concepts) then pretty much all the rest are indeed based on BSL, except for PGSS. I would prefer to have a sign system that doesn't alter the BSL signs as Maria has the ability to move her arms, hands and fingers reasonably well - only her fine motor skills need some work. 

Before choosing a sign language for Maria, I thought about the community of people she might communicate with. First is her family. Second is her school. Third are the neighbours and their children. Fourth is our church and the people we meet. Fifth is at the supermarket and sixth are our friends (in these austere times we see them much less). Apart from school, none of these people know BSL or Makaton. 

At home we normally speak to Maria and occasionally sign (although this is rare in practise). What if Maria reached the age of six and still couldn't speak legibly? Would she need a proper language like BSL? Who would she talk with: the British Deaf community? Seems unlikely since it took me over fifty years to meet a member of the Deaf community. All this means that Maria is going to lead a pretty isolated existence unless she learns to speak. What a bleak thought. Since Maria is probably going to live with us for some time as an adult then we'd better think carefully how we're going to communicate. Will it be English or will it be a sign system or even BSL?

An appreciation of the impact of all these sign systems has been witnessed first-hand by Frances Elton, a prominent member of the Deaf community, who summarises some of the experiments on deaf children by hearing officials during the past few decades and the impact they've had on the Deaf community. Here's the transcript of part of an interview she made in 2012

'The focus for the teaching was on deaf children understanding English. There was no template for this so various artificial language systems were created. The most commonly used is SSE (Sign Supported English), following the word order of English. A precursor of that was Signed English. Those were the two most-used in trying to develop English language skills. Then there was Paget Gorman, a sign system that was explored. Then Cued Speech as a way of helping develop spoken language. Makaton came in, really as a way to help the receiving of language, and is more suitable for those with learning difficulties. Then Total Communication, which was very prevalent and is now evolving into other ways. 

There are a number of artificial systems used in schools and these came about as teachers and educators considered what they thought best for deaf children, and prioritised speech as important. So from that the Cued Speech system was developed, the aim being to teach children how to articulate English and have a visual representation of the sound each articulation made. 

Paget Gorman was a sign system created to help develop the understanding of English word order, so the focus of signing and speaking was on word order. 

Signed English was to help with the reading of English, the grammar, how to recognise tense, that '-ed' represented the past and so on. 

Makaton was a created system that should have never really been used in schools [with deaf children]. It was suitable for those with learning difficulties or brain injury. Makaton borrows signs from BSL and then adapts them to facilitate simple communication with those with Down's Syndrome for example. It has been appropriated for BSL teaching and that should never really have happened. 

In most widespread use [in schools with deaf children] is SSE. Even if teachers are fluent in BSL, the focus of educators has always been on the acquisition of English to the same fluency. The idea being that on leaving school, the child would have the option to operate in BSL or English. It's helpful within the school environment to have written English but there needs to be a clarity and emphasis on the fact that the grammars of English and BSL are quite distinct and separate. 

Having gone through the education system I would say that most, on leaving school, revert to using BSL and all that implies, or remain isolated from the [Deaf] community. There is anecdotal evidence of this happening. One person for example, now is the most fluent of signers, grew using Cued Speech, Paget Gorman but that didn't impact on their sign language at all. They're fluent, they teach sign language. For others, their communication was more severely affected, particularly in communicating with other deaf people. The way they learnt through Paget Gorman was so restrictive, there was no ability to adapt and so causes isolation. 

These are not systems of the wise. They were created to benefit the hearing establishment, not the deaf children. There has been no profound or lasting benefit for the Deaf community; it has probably been a little damaging. A few lucky survivors have managed to retain and maintain fluency in BSL.' 

So, those Deaf children who weren't given the opportunity to learn BSL found themselves isolated from their own Deaf community; SSE, Paget Gorman and Makaton effectively isolated them from the community that would have treated them as equal members. The attempts by hearing people to force Deaf children to join the hearing community were resented by the Deaf community in much the same way as people committing genocide are resented by those whose race, community and culture are being eradicated. In case you might think I'm going too far with that analogy, these sentiments are implied in a recent short film on BSL Zone called The End, and were actually expressed by Alexander Graham Bell according to another short film, Confession

To a hearing English speaker, BSL appears to be missing indispensable grammatical features; so how is it that BSL users appear to be able to communicate so effectively without them? Languages like BSL don't appear to need an intricate and complex visual grammar. BSL's grammar is not trivial, judging by some of my text books, but it seems to be a lot simpler than English. It's this simplicity that argues in favour of using BSL for children with developmental delay. Few educators address this point. The fact that the word order is different in BSL compared to English seems trivial compared to learning the intricate complexities of English grammar. This is one reason why I haven't ruled out BSL as a possible future language for Maria. In fact, the potential of BSL has been overlooked by both the Deaf community and the hearing community, who view BSL as either a native language or a foreign language respectively. Either way, BSL is dismissed as inappropriate for people like Maria who are, in effect, hearing-mute. My gut feeling has always been to let Maria learn BSL, regardless.

But getting back to the original question of which system to choose for Maria, I was considering sign systems based on BSL, which left me with four possible candidates:  
1. British Signed English (BSE)
2. Makaton 
3. Signalong
4. Sign Supported English (SSE).
But in my heart-of-hearts I really wanted British Sign Language (BSL). 

I don't know enough about Signalong to comment on it but I do know about Makaton, which looks like a simple and pretty flexible sign system, nowadays offering SSE modeBSE mode and Function mode. I've yet to meet a BSL user who can recognise all the Makaton signs but ignoring this conundrum for a moment, Makaton seems to be popular and flourishing in the UK, particularly in Special Schools like Maria's. 

BSE strikes me as a bit long-winded and I don't feel it's that important for Maria to be grammatically perfect at this stage; she only needs to express herself in English and signs. That's why I'm interested in SSE, which uses BSL signs for key words but places them in English word order to reflect Maria's receptive language. 

Finding a happy medium between receptive and expressive language, I'd favour Maria learning SSE using unmodified BSL London and South East regional signs. Our family could be trilingual, using a mixture of English, SSE and BSL in whichever grammar was convenient. 

Looking at the sign systems supporting SSE, we have SSE itself and Makaton in SSE mode. If I were to choose Makaton then I'd want to substitute some of the Makaton signs with  commonly used BSL signs. 

Since Maria can grasp the idea of multiple signs for the same concept and given the popularity of Makaton and the fact Maria is already using it at school, it should be possible to add additional BSL signs to her existing Makaton vocabulary where necessary; I don't believe this would confuse her.   

So, in conclusion, it looks like the most practical approach is to choose Makaton in SSE mode but using the most prevalent BSL London and South East region signs in preference to the Makaton ones; that's going to be a lot of hard work. I can't help feeling it would be easier to just choose BSL. 

To help Maria's word articulation I'm happy with either CS or CA since neither is used for communication; Maria's special school uses CA.

Unfortunately none of my BSL dictionaries tell me in which UK region a sign is used, making it difficult to determine if a BSL sign is from the London and South East region or not; it would also help if they stated the UK prevalence of signs, so I could choose the most popular of several alternatives. 

Practically speaking, and to overcome the deficiencies in dictionaries I just mentioned, the best way for Maria to learn BSL is for the parents to learnt it first, preferably from a teacher who uses the London and South East regional dialect. So that's what I did. My teacher is Sandra Duguid and she runs a business called BSLworksTo digress a bit, a recent interview with Sandra in the UK Mirror newspaper sheds light on what happens in a country where the government of the day bails-out bankrupt banks but appears powerless to help disabled people running small but solvent businesses.

Friday, 7 June 2013

Which Sign Language?

What about baby signing?
So here's my concise tour of the sign systems and related languages of the UK. 

Imagine a colourful spectrum of languages with the British English Language (BEL) at one end of the spectrum and British Sign Language (BSL) at the other. Both are proper languages but one (BEL) uses sounds and intonation as a means of expression whereas the other (BSL) uses gestures and expressions. Each have their own unique sounds/signs and grammar and are used by the majority of people in their respective communities. Both languages have developed in the United Kingdom but have done so quite independently. That's roughly the relationship between BEL and BSL today. History however has a more colourful story to tell and it's only as recently as March 2003 that the British Government adopted BSL as one of the nation's official languages.

Between the BEL and BSL bookends we have an array of sign systems that have developed for similar yet different reasons; all the sign systems discussed here are forms of Manually Coded English, meaning they combine signs with speech to teach English:

British English Language (BEL)
British English is the native language of the United Kingdom. It is primarily used by hearing people and bilingual (BSL and BEL) deaf people.

Origin: Britain 11th century
Hand signs: NO
Colour codes: NO
Fingerspelling: NO
Sentence structure: subject-verb-object
Grammatical markers: YES
Voiced YES
Mouth patterns: YES
Word order: English 
Key words only: NO
Graphic symbols: YES (English writing)
Usage: at least 62 million hearing and bilingual (BEL, BSL) deaf people in the UK.

Two-handed Fingerspelling (FS2)
FS2 uses both hands to make hand signs that represent the letters of the English alphabet. Not to be confused with One-handed Fingerspelling (FS1).

Origin: UK 1720
Hand signs: NO
Colour codes: NO
Fingerspelling: YES (FS2)
Sentence structure: none
Grammatical markers: NO
Voiced NO
Mouth patterns: NO
Word order: NO
Key words only: NO
Graphic symbols: YES (English alphabet)
Usage: Supplements most sign systems and sign languages.

Cued Speech (CS)
Cued Speech was created by Dr Orin Cornett of the US in 1966. He noticed the poor reading abilities of deaf children because they cannot hear spoken language and therefore cannot distinguish visually between sounds like /p/ and /b/. CS comprises 8 handshapes in 4 positions near the mouth as well as the lipshape of English speech. CS is best known in the US and is sometimes used in the UK by the English speaking BSL community.

Origin: US 1966 by Dr Orin Cornett
Hand signs: YES (handshapes & positions)
Colour codes: NO
Fingerspelling: NO
Sentence structure: subject-verb-object
Grammatical markers: NO
Voiced: YES
Mouth patterns: YES 
Word order: English
Key words only: NO
Graphic symbols: NO
Usage: US and UK bilingual deaf community.

Cued Articulation (CA)
Cued Articulation was created by Jane Passy of the UK in the early 1980s. She noticed the difficulty that speech and language impaired children had in producing and recalling speech sounds. CA comprises 49 speech sounds (phonemes) together with hand cues (signs) and colour codes. CA uses the International Phonetic Alphabet (IPA) to express the articulation of phonemes. There are 26 consonant speech sounds with colour codes and 23 vowel speech sounds (which have no colour codes). The system of hand gestures (cues) shows how and where each sound is made and if the sound is voiced or voiceless. For consonants, the position of the hand indicates where the sound is made; the shape and movement of the hand shows how the sound is made and the use of one finger or two indicates if the sound is voiceless or voiced respectively. For vowels, which are always voiced, the whole hand is used for cueing; the shape shows the degree of lip rounding or spreading; the movment shows if the sound is long or short and the direction of the hand shows whether the sound is made in the front, middle or back of the mouth. CA is best known in the UK, Ireland, South Africa and Australia where it is used in special and mainstream schools to help children become aware of how to articulate the sounds of English speech. It is not used widely among the British Deaf community. Maria's Special School uses CA.

Origin: UK early 1980s by Jane Passy
Hand signs: YES (hand cues)
Colour codes: YES
Fingerspelling: NO
Sentence structure: subject-verb-object
Grammatical markers: NO
Mouth patterns: YES 
Word order: English
Key words only: NO
Graphic symbols: NO
Usage: UK by people with hearing or speech impairment and those learning English.

Paget Gorman Sign Speech (PGSS)
Systematic Sign Language was first developed by Sir Richard Paget in the 1930s to teach deaf children to speak English. A new version called PGSS was released in 1964 by Lady Paget and Dr. Peter Gorman. PGSS comprises 37 basic-signs and 21 standard hand postures which roughly match English words to PGSS signs, although there are additional signs for grammatical markers (affixes) like '-er', '-ing' and '-ful'. PGSS uses English grammar and children are encouraged to speak as they sign, with facial expressions like that of a native English speaker. PGSS signs are not derived from any other sign system and it was forced on some children in Deaf schools from the 1960s to 1980s, after which it lost popularity to BSL. Nowadays PGSS is used mainly by children with speech disorders who do not have learning disabilities. 

Origin: UK 1930s by Sir Richard Paget; 1964 by Lady Paget & Dr Peter Gorman.
Hand signs: YES (PGSS)
Colour codes: NO
Fingerspelling: YES (FS2)
Sentence structure: subject-verb-object
Grammatical markers: YES
Voiced YES 
Mouth patterns: YES 
Word order: English
Key words only: NO
Graphic symbols: NO
Usage: UK by people with speech disorders but without learning disablities.

British Signed English (BSE)
Signed English (SE) was originally developed by Harry Bornstein in 1974 to teach deaf children to speak English. The British variant, called British Signed English (BSE), has a vocabulary of BSL or generated signs (sign words), fingerspelling (FS2) and grammatical markers (sign markers) like '-er', '-ing' and 'un-'. BSE is presented with normal speech to convey the full BEL grammar. BSE is not intended for everyday communication because it is slow but is used to teach English grammar. It's not clear how many still use BSE in the UK, possibly some bilingual Deaf people.

Origin: US 1974 by Harry Bornstein
Hand signs: YES (sign words: BSL and generated signs)
Colour codes: NO
Fingerspelling: YES (FS2)
Sentence structure: subject-verb-object
Grammatical markers: YES (sign markers)
Voiced YES 
Mouth patterns: YES 
Word order: English
Key words only: NO
Graphic symbols: NO
Usage: possibly some UK bilingual Deaf people

Makaton was first developed by Margaret Walker around 1972 to help cognitively impaired deaf adults to communicate. The original Makaton Vocabulary comprised 145 signs but was revised in 1976 by the Revised Makaton Vocabulary project to 350 signs. Eventually the Makaton Vocabulary Development Project (MVDP) came under pressure from groups like Signalong to expand the vocabulary to around 2500 signs. Currently the Makaton Vocabulary has a Core Vocabulary of 450 concepts and a Resource Vocabulary of over 11,000 concepts covering topics like: money, sport, food & drink, religion & custom, sexuality and grammatical elements; each concept is represented by both a sign and a symbol. Signs are usually based on BSL from the London and South East England region; sometimes these are simplified. Some signs are generated. 
Nowadays Makaton signs  and symbols can be used in three ways (the names of the modes are mine, not Makaton's): 
1. BSE mode: to represent every word in a sentence; e.g. the man is eating an orange.
2. SSE mode: to represent the key words in a sentence; e.g. man eating orange
3. Function mode: to represent the whole sentence; e.g. eating
The English mouth patterns are always voiced. Makaton is used mainly in schools where children have speech and language disorders; Maria's special school uses Makaton. However, users beware; The Makaton Charity has copyrighted the Makaton system

Origin: UK 1972 by Margaret Walker.
Hand signs: YES (BSL, simplified BSL and generated signs)
Colour codes: NO
Fingerspelling: officially NO; unofficially YES (FS2)
Sentence structure: subject-verb-object
Grammatical markers: YES (BSE mode); NO (SSE mode)
Voiced YES
Mouth patterns: YES
Word order: English
Key words only: NO (BSE mode); YES (SSE mode
Graphic symbols: YES
Usage: children and adults with speech disorders who have learning difficulties.

Signalong was founded by Gill Kennard and Thelma Grove in 1992 at the National Autistic Society special school in Kent, UK after the Makaton Vocabulary Development Project (MVDP) failed to expand their vocabulary sufficiently. Signalong is now managed by The Signalong Group charity and the Signalong sign system contains over 15,000 signs, most based on BSL but some are simplified and other signs are generated. I haven't been able to find out much about this signing system based on publicly available sources. It would help their cause if they offered more free information on how their system works; and someone in the Group should write a really good article in Wikipedia about their origins, history, philosophy and implementation of the sign system itself. Maria's new school in South Wales uses Signalong instead of Makaton; any differences between the two systems seem to have escaped Maria. 

Origin: UK 1992 by The Signalong Group.
Hand signs: YES (BSL, simplified BSL and generated signs)
Colour codes: NO
Fingerspelling: unknown
Sentence structure: subject-verb-object
Grammatical markers: NO
Voiced YES
Mouth patterns: YES
Word order: English
Key words only: YES
Graphic symbols: NO
Usage: children and adults with speech disorders who have learning difficulties.

Baby Sign Language
Baby Sign Language was first developed by Dr Joseph Garcia in 1987 in order to help babies and young children to communicate with their hearing parents. Garcia was an American Sign Language (ASL) interpreter. He noticed that the children of his deaf friends were communicating in ASL with their parents as early as six months; these children had quite developed vocabularies by the age of nine months. In contrast, hearing children typically speak a few words at the age of one year and have a small vocabulary at the age of two years. The early language development of so called 'handicapped' Deaf children was noticed as early as the 19th century by the American linguist and Yale professor William Dwight Whitney.  

Origin: US 1987 by Dr Joseph Garcia.
Hand signs: YES (ASL or BSL with simplified BSL)
Colour codes: NO
Fingerspelling: YES (FS2)
Sentence structure: subject-verb-object
Grammatical markers: NO
Voiced YES
Mouth patterns: YES
Word order: English
Key words only: YES 
Graphic symbols: NO
Usage: typically infants of 9 months to 3 year old toddlers.

Sign Supported English (SSE)
Sign Supported English (SSE), also known as Signs Supporting English, was developed at Meldreth Manor School, Hertfordshire in the 1960s by the Deaf community themselves to help children with profound and multiple learning difficulties and complex needs. SSE uses BSL signs and fingerspelling to sign the key words of an English sentence using BEL word order. SSE doesn't use grammatical markers like BSE and does not require knowledge of BSL grammar. The English mouth patterns can be either voiced or unvoiced.  SSE is used in mainstream schools where deaf children are taught alongside hearing children and also for children with learning disabilities.

Origin: UK 1960s at Meldreth Manor School in Hertfordshire
Hand signs: YES (BSL)
Colour codes: NO
Fingerspelling: YES (FS2)
Sentence structure: subject-verb-object
Grammatical markers: NO
Voiced YES
Mouth patterns: YES
Word order: English
Key words only: YES
Graphic symbols: NO
Usage: hearing people who subsequently become deaf or Deaf people who engage with hearing people. Also used by people with learning disabilities.

British Sign Language (BSL)
BSL uses native BSL signs together with fingerspelling to express BSL sentences in BSL grammar. The words are always unvoiced. In BSL 'name you what?' means in English 'what is your name?'. There are around 50,000 deaf people in the UK. BSL is the first language of the UK Deaf community. BSL was officially recognised by the British Government as being a full, independent language in March 2003. BSL can also be used by mute people; previously, Maria fell into this category.

Origin: Britain 1570
Hand signs: YES (BSL)
Colour codes: NO
Fingerspelling: YES (FS2)
Sentence structure: topic-comment
Grammatical markers: NO
Voiced: NO 
Mouth patterns: YES
Word order: BSL
Key words only: YES
Graphic symbols: YES (notation system for shape (dez), place (tab) and movement (sig))
Usage: mainly people who were born profoundly deaf, although mute people also use BSL to express themselves.

Hand signs: does this system use hand signs? The term simplified BSL means the signs are based on BSL but are adapted for the user. The term generated means the signs are created for the particular sign system.
Colour codes: does this system use colour coding to help identify sounds?
Fingerspelling: does this system use fingerspelling? It can be of either one-handed (FS1) or two-handed (FS2) fingerspelling.
Sentence structure: the most typical type form of sentence. It can be subject-verb-object (e.g. Have you been to France?) or topic-comment (e.g. France been?)
Grammatical markers: does this system use signs to mark the endings of words e.g. '-s' for plural.
Voiced: does this system require the signer to voice the words? Note that unvoiced words are written as crossed out e.g. you (in BSL you would simply point, without saying the word).
Mouth patterns: does this system require the signer to mouth the words?
Word order: which language order does this system use: BSL or BEL?
Key words only: does this system require the signer to sign only key words?
Graphic symbols: does this system also include additional graphic/iconic symbols?

1. 'Sign Language: The study of deaf people and their language' by J.G. Kyle and B Woll (1985). The book is dated but much of the information is still relevant, particularly chapter 13.
2. 'Sign In Sight: A Step into the Deaf World' by Cath Smith (1992)
3. 'Words In Hand: A structural analysis of the signs of the British Sign Language' by Mary Brennan, Martin D Colville and Lilian K Lawson (1984).
4. 'Dictionary of British Sign Language/English' edited by David Brien (1992). 
5. 'Makaton Core Vocabulary Signs', The Makaton Charity (2010).
6. 'British Sign Language: London and South East Regional Signs' by Frances Elton and Linda Squelch (2009).
7. 'Manual Communication: Implications for Education' edited by Harry Bornstein (1990).
8. 'The Linguistics of British Sign Language: An Introduction' by Rachel Sutton-Spence and Bencie Woll (1999).
9. 'The Comprehensive Signed English Dictionary' edited by Harry Bornstein, Karen L Saulnier and Lillian B Hamilton (1983).
10. 'Sing and Sign Vocabulary Book' by Sasha Felix (2005).
11. 'Let's Sign Dictionary: Everyday BSL for Learners' by Cath Smith (2009).
12. Signed Systems by Frances Elton.
13: 'Hidden Histories: Deaf Education in the Seventies'.