At the time of my son's diagnosis I had no idea what a ‘disability' was, or its implications. In fact, the word ‘disability' was never even mentioned. As with many families, we received no specific diagnosis and instead began a journey to find out what our son could and could not do.
Reflecting back to when I was told my baby was ‘floppy', I had a feeling of being terrified, and emptiness. I can remember my first thoughts were: ‘what does this mean, what are they telling me?' This was a very traumatic time and all I wanted to do was go home and speak to my husband. The consultant was very matter of fact.
I wasn't offered any support to think about choices of schools for my son, or for understanding the statementing process. I was simply told that my son would have to go to a special school. It was the community paediatric consultant who had autonomy over placements at that time, as she was the person the local authority looked to for advice and direction.
Looking back, I realise now that there was a clear process the professionals were following, but as parents we were brushed off and excluded. At one stage when I asked what would happen I was told that they had a ‘black hole' in the system. This basically meant that if you could get the child into a special school before assessing them, it would be harder for parents to move them back into mainstream education.
Looking back, I realise now that there was a clear process the professionals were following, but as parents we were brushed off and excluded.
It was only after the first assessment and statement were completed and our son had started school that we began to get a better picture of the level of support he needed. Reading the first set of professional assessments gave us our first bench mark, and we realised we were not happy with our son's statement.
Once I knew we should have had a bigger input in the process I sought out independent advice, which helped us understand what good support should look like. I also went on a statementing training course. We did not find out about the parent partnership service until much later on. I think it would have helped if we had known other parents who had already been through the statementing process and had experience of it.
Looking back, I wish I'd known that as a parent it is essential to be fully informed and involved in the assessment and statementing process. It's also really important to know your legal rights and exactly what duties the local authority has to fulfil. I also wish someone had told me which parts of the statement were the legal parts that had to be fulfilled, and that we had been given a better idea of how to spot a bad assessment and statement.
The support from my son's primary school was very much about home communication and a toy library group that was available once a week for a couple of hours. However this was quickly dissolved by the head teacher when he realised that as informed parents we were starting to rock the boat. We worked with a mixture of specialists and our son's teacher at this stage, but the system relied a lot on us as parents asking for advice.
We visited the secondary school we had chosen for our son, but in the end we were not given our first choice of school, so we had to take it to tribunal. Secondary school is completely different to primary school - how they do things is different, what they expect from the young person is different. The year before a child goes to secondary school it's definitely a good idea to find out what their new school's expectations of them will be, what support the school will provide and how they will keep in contact with the family.
Secondary school is completely different to primary school - how they do things is different, what they expect from the young person is different.
There were no before or after school clubs at our son's primary or junior schools. His senior school has started some after school clubs in the last 18 months, but these are only for certain students on selected nights. I tried to get my son into an after school club at a mainstream school, but they turned us down. Social services are currently providing specialist activities but these are very often cancelled because of difficulties recruiting volunteers. For the first time last year the school held a 3 week summer scheme, but outside of school the possibilities for young teenagers in our area are non existent.
It was and still is hard to make contact with any other parents through the school or our social worker. Most of the contacts I have made have been outside of the school environment through training programmes and summer play schemes. I started to build up a parents' network after attending a course, then asked the school if I could pass my information on through their home communication system. I also made myself available to parents in the evening via telephone if they wanted to get in touch.
Our son's school did not allow him to get involved in the planning of his education, and to this day they have not mentioned person-centred approaches. It is only because of my own knowledge and training that we have started using it with my son outside of school transition reviews. Now I do the planning myself using a person centred planning tool, with the help of an independent agency.
My son's health has got better as he has got older, although personal health and well-being have become more significant in his teenage years. I have never received any support from our local GP, and I still don't. My son has an annual review with the specialist health care team at the SEN school, and I have received some information about puberty. However, this was only after my son began experiencing difficulties and I requested some support. This is definitely an area where there is not enough information for young people with a learning disability. I have tried to find out how the school supports my son with this but with little result - instead I have had to educate myself about the subject and now I deal with it at home.
My son's health has got better as he has got older, although personal health and well-being have become more significant in his teenage years.
It is only when we receive short break care that we get to spend quality time with our other son. The rest of the time everybody has to wait, including ourselves, because there is just no time left. You're always too busy catching up on the things you cannot do because you're supporting someone else, which can make you feel very detached and unsupportive. What it does mean, though, is that when I can give some time it's a very uplifting experience.
In the early years it worked well for us having a family placement. However, now that my son is a teenager we have found that service provision does not accommodate the changes families go through or the flexibility they need, for example if parents want to go back to work. Since our son moved to secondary school we have found the number of services available for him has decreased, and our family placement will end when he turns 18. What the local authority is offering after this age is not suitable for my son.
Over the years we have lost our personal friends. We have also been isolated from our community because of our ‘special' circumstances. It has affected both my own and my husband's health in the long term, and has had emotional implications for our other son, which spilled over into his school environment. My main sources of support have been my husband and a very close friend, who is also a parent-carer.
In the future, I hope that my son gets the support he requires in his own right and that this continues to be recognised and supported. I also hope that when the time comes for him to move away from home, services will have become more flexible so we can do it in a staged approach. I have always found it hard to separate out my role as carer and my role as mum - I have a great relationship with my son but I worry about our future separation and the impact this will have on both of us.
My son sees me as the centre of his world.
Family placement: time spent in a home environment for people with learning disabilities who need respite, short or long term care.
Person centred approaches: an approach that involves listening to what someone wants from life and helping them to achieve it.
Parent partnership service: A service that provides information and advice to the parent of any child with special educational needs. This service is only available in England.
SEN: stands for special educational needs.
Short break care: opportunities for people with a learning disability to spend some time away from home.
Transition reviews: an opportunity to discuss your child's movement into further education and adult services.