We are blessed to have two beautiful 17 year old girls – twins – with blue eyes, blonde hair and smiles to die for.
They look like any other teenagers but underneath they are a little different – they both have language and communication difficulties, which over the years has had an impact on their learning and social life as well as on our family life as a whole.
I knew there was something different about Rachael and Sarah when they were between 18 months and 2 years old. They struggled to keep eye contact with me and didn't appear to hear what I said.
A visit from the Health Visitor validated that things weren't right and the girls were one by one referred to a multi-disciplinary team at a centre, where assessments took place over a 6 week period.
"We were told our girls had speech and language delay. This label has proven tricky over the years as people often think that means they struggle to communicate because we live in an area that has some social deprivation. The girls were not having difficulties because I didn't talk to them enough – this was much bigger than that, they had specific difficulties with learning language.
At age 3, the girls had very few words - only 20 – 30 single words - and I became increasingly concerned about how they were going to cope in a mainstream school when they couldn't communicate. While they only had single words, I noticed that they started to respond to signing used at the centre and this set me off on a quest to find out about Makaton – this journey has led me to work for The Makaton Charity as a Makaton Regional Tutor.
Around the time we were learning Makaton, Rachel came into the kitchen and threw herself on the ground having a flap. I got down on my knees and used Makaton to sign and speak 'What do you want'. Rachel stopped flapping and smiled at me and it felt electric – we both knew we had communicated! We continued to use Makaton at home, and the school also used Makaton symbols and signs everyday to communicate and teach new vocabulary and language skills. Both girls began to speak and sign sentences!
We fought to get a statement for the girls to attend special school; however the inclusion agenda meant we always had an axe over our head about whether they would retain a place. In time the axe came down and we were forced to look for another school, a mainstream school they had been attending a couple of afternoons a week.
Once there, things weren't what we expected. Things became very difficult – the school had little training around speech, language and communication needs and when we spoke to the Head about the lack of specialist support and Makaton symbols and signs, we were told 'If they need things like that, they shouldn't be here'. We were stuck between a rock and a hard place – where else could we go? Special school were saying 'go to mainstream', mainstream were saying, 'they shouldn't be here'; yet, we were in their hands.
We then took on another fight for 3 years to get Makaton used in the school and help from a Speech and Language Therapist, but we got nowhere and that left me feeling alienated and angry. I went from being an amicable mother to a mother with a temper that was probably seen as 'irritating', I was a 'pushy parent'. In this time, the girls were starting to fall further and further behind.
We weren't being listened to and felt we had no other option but to seek independent speech and language therapist advice and an educational psychologist. It came at huge cost that we had to foot personally. We took our local authority to a tribunal or the 'lion's den' as I called it. We ended up going through three for one daughter and one for the second daughter.
I cannot express the stress and emotional heartache that comes through going for tribunals. The process is complicated and difficult to navigate. I was a mother just fighting for my kids' rights but was left feeling alone and isolated.
Family life had to continue while these tribunals were going on and that was tough. This is such a hidden disability that people just don't get it, my house would be a mess and I was being judged for it without people truly recognising the stress we were going through, and the endless complicated paperwork!. During this time, I also learnt more and more about Makaton and how flexibly it could be used, and the girls moved into secondary school.
We finally got what was needed; support from an excellent Speech and Language Therapist in independent practice, paid for by the LEA. Joining The Wavell School, and receiving caring support from the expert staff, changed everything. The school had a family attitude, and with the 'whole school training' that was put in place and support to the school from the independent Speech and Language therapist, they welcomed my girls in as whole people – not just children with specific needs. They readily made real relationships with the girls.
With care and support the girls became less fearful, and began to learn. We felt like the whole school made changes to teaching strategies to accommodate their learning needs. They became happy at school and gained emotionally, socially and educationally.
There is a monument outside The Wavell School, called 'The Hug' that symbolises love, support and how to value children. This was the experience Rachael and Sarah had. The school had the training to understand that this wasn't language delay, but a specific disorder, and no matter how emotional I got, they never judged me, but looked past that, and seemed to always understand where I was coming from.
Rachael is doing performing arts at college. Sarah has just got into university, studying performing arts with musical theatre. She and the whole family are very excited! Both Sarah and Rachael are intelligent, so both are capable of using their impaired language and communication skills to the best of their ability to engage and have an excellent social life with their peers.
The girls enjoy Facebook, which is a godsend for social networking, and no one judges spelling, as apparently it's 'random'!