Because I had an older disabled child I knew more about what to expect during this stage, and I was aware that my son would be coming into transition at 13.
I knew about the Connexions service - although the challenge we faced was getting the education department to notify them about us. I went to a meeting where I happened to meet a Connexions worker and I told her my son was in an out-of-county placement. She told me that they had not been notified that he would be coming through to them, despite having a list from the education department, so she advised me to ring them to let them know that he had slipped through the net. When I did this, the education department blamed the Connexions service. In the event, I was given a very helpful Connexions worker, but I dread to think what would have happened if I had not pursued matters.
My son has been much more independent of us as a result of his placement, although this was not an ideal situation for any of us to begin with. I would have liked him to have 24 /7 care more locally so that we could have greater involvement, and so he could make contact with other young people. Thankfully the respite care has provided some of that linkage, and has been a constant in his life for years. I was given a lot of support when my son first went to a residential school - emotionally it was very hard - but now we are all more used to the situation. My son looks on home as a place to chill out though, so he is not keen when we ask him to do things for himself!
I was given a lot of support when my son first went to a residential school - emotionally it was very hard - but now we are all more used to the situation.
His school specialises in supporting children with severe communication problems and learning disabilities, and they give him lots of support to get involved in things. He boards there for 38 weeks of the year and does many activities, such as swimming, tobogganing, and going out on trips. My only worry is that all this could end when he moves into adult services, as the level of support is likely to be much less, even if he was in supported living or in a residential placement.
I was able to get the right support at this stage of my son's life, but only because I had been through the process before and had fought the system the first time round. It's very confusing for carers going through transition for the first time, as there are different transitions at different stages for different services. I was not given any formal guidance other than from the Parent Partnership service, and from attending a workshop that other parents had requested. However, the school staff and the Connexions worker were really supportive. I was also allocated a transitions worker, who was helpful and practical, and a worker from the children's disabilities team who had worked with my son before, so there was some continuity.
As a result of this support, my son was able to remain in the sixth form at his school where he was very settled, rather than being moved to a special needs unit at a local college. He has had some excellent teachers there who have really cared about him, which has been a great help, and the school helped him to plan so that the move into sixth form did not come as such a big shock. His routine did change totally, as he was able to move around the site and in the community much more, but in the end we discovered that he loved the changes - he much preferred the practical, daily living skills to struggling with things like numeracy and literacy. Now the next hurdle is to start thinking about the post-19 stage, and what he will do next.
During the transition stage I was aware of my son's right to be consulted, although this was very hard to achieve as he has no speech. We videoed his needs to help us all with planning, and it was great to see him gaining new skills and being proud of himself. However, I did know at this stage that when he reached 18 my rights as his carer would change - although again, as his needs are severe and he has no speech he will always be heavily reliant on others, if not on us then on other advocates. From his level of learning disability it is very clear that he will not be able to give informed consent, so others will always have to be involved in his future. This is the scary thing - how can we make sure that his needs and wishes are truly respected?
From his level of learning disability it is very clear that he will not be able to give informed consent, so others will always have to be involved in his future.
We are still going through the changes of transition and I feel that, despite the discussions, very little will happen in reality until my son is 17. The biggest headache for us is that we have been thinking of moving and we are not sure whether this would make things better or worse for our son, as it is hard to get a real impression of other local authorities. If we decide not to move until he is 18, he will be effectively ‘owned' by the county we live in for the rest of his life. If we wanted to move at a later stage to be near elderly relatives, we would have to try to negotiate to get our current local authority to pay for our son to be near us. If they refused, we would be stuck. I think the system needs overhauling so that there is no postcode lottery of care and so that the funding goes with the person wherever they are, but linked to the cost of living in that area.
Even puberty has not happened as it should for my son. We have encountered different problems to many parents as he has delayed puberty and is seeing a consultant. The treatment they have in mind for him would involve lots of hormone injections, but the doctors are worried this could exacerbate his challenging behaviours, so they are playing a wait-and-see game. As a family, we have different opinions on the treatment - is it better that we accept that he will not change and will remain the size of an 11 year old boy and look like one, or should we do something so that, at least in this area of his life, he can be like other young people. Or will it frustrate him to have sexual feelings and yet not have the developmental and emotional skills to cope with those feelings?
With our daughter, who also had a learning disability, puberty was normal. We felt that she needed to be well prepared for the changes she would be going through, and her school was very supportive both in teaching and in generally handling the feelings that she had to cope with. Looking back, we had a very easy time with her. Health wise, support for my son has generally been variable but dental care has been a nightmare, as he will not allow a dentist to examine him. I worry he has got bad teeth and he won't let us look at them.
During this period I was also caring for my parents-in-law. Sadly my mother-in-law had cancer and we supported her through her terminal illness, and we also looked after my father-in-law, who died after a short illness. At the time our other children were definitely aware that we were worried and stressed. They knew that we would have to spend so much time getting things sorted that they would lose out on our time and attention. Our other children did get offered support, but not in a form that they may have wanted. My middle daughter did not want to go to a young carers group, nor did she want formal counselling with a psychologist. Years ago she went to an activity-based siblings weekend and loved it, but that was a one-off.
Our other children did get offered support, but not in a form that they may have wanted.
I have had a carer's assessment but it was carried out a while ago - things have changed a lot in our family so it really needs to be done again. We had to challenge the level of care offered the last time round but at the moment we are getting good support - although I suspect we will lose this in the long-term. He also receives care from a respite centre, which is run by a local charity, and we fund it using direct payments. The biggest worries we have had have been around budget cuts to packages of respite care, but this is better now locally - the services survived after we all campaigned.
I was unable to work at all for 24 years after I had my daughter, as her health needs were colossal. However, I was able to work when my son was in transition, as by then his sister had sadly died. Also, he was at a residential school - if he had not been, I would have been unable to work at all. Now I can get respite care, and I am able to work because I can do it flexibly from home. My husband also works permanently from home, so he can take on my role when I need to travel. However even with all this support it is still stressful, as my son needs 1-to-1 care all the time.
Leisure has been our greatest challenge, as my son is very noisy and can show challenging behaviours, so it can be very difficult to find places to go out that aren't walks or things to do outside. The bigger he gets, the harder it gets to take him to places, as other people are frightened by his noisy, unpredictable behaviour. It saddens me to see how people stare or how they move away when he is near them.
We were told about some local resources, such as a toy library, but we didn't hear anything from the youth service at all. Cinemas were off-limits until our local cinema did autism friendly screenings, so it didn't matter if our son walked around or was noisy, and now the one really good resource we use is an activity centre set up by parents that has fantastic facilities - my son loves the sensory room.
My son hasn't moved into adult services yet, so I don't know what will happen to him. I feel very anxious about the future, as there is a lot of uncertainty around his arrangements. I have received information on the changes to child benefit, but I will need to sort out an independent living fund for him when he leaves school - it's a minefield with all the other stuff going on in our lives.
I feel very anxious about the future, as there is a lot of uncertainty around his arrangements.
I have not had any training in person-centred planning as it was offered when I was at work, so instead I have bought a book to help me and have talked to friends who have done this planning with their sons and daughters. Apparently, there is an advocate at the school but all we get told is that advocacy has been done, with no feedback. The sad thing is that the co-ordinated care, which looks at all the aspects of the person's medical needs, is not available in adult health services unless someone is fortunate enough to be referred to a rehab consultant.
Helping my son to think about the future for himself has been a very slow, step-by-step process, which has mainly centred on his preferences for day-to-day living and identifying his likes and dislikes. It will take a lot of creativity to put together a plan for his adult life. I worry that I do not have enough time to spend on this and I want it to be done well - it would be great to be allocated someone who could help. My concern is that it all happens at the last minute. Why is it not possible to plan in detail 2 to 3 years in advance so that everyone knows what to expect?
Advocate: a person who supports someone else to communicate what they want to say.
Carer's assessment: an assessment of a carer's needs and what support they need to continue in their role.
Direct payments: in some cases, individuals may be able to receive support for their local council as cash, allowing them to choose the services they want for themselves.
Independent Living Fund: a resource for people with a disability to allow them to live more independently.
Person centred planning: an approach that involves listening to what someone wants from life and helping them to achieve it.
Respite: allows you as a parent to take a break from your role as a carer.
Transition: the process of planning for the future when moving from childhood into adulthood.