We had enough knowledge about autism before he was diagnosed and it was us who asked for his assessment. We were given a very negative impression, which we knew was misleading. It would have been beneficial to be given some positive examples instead of information on benefits, respite and bereavement counselling!
Fortunately for us we didn't have to fight for any health support and our son has continued to have his needs met by the relevant people. We like the fact that we can contact professionals when we need them - we don't need continual support, and I think we would find it intrusive. We are confident that we can find the information we need and we continue to receive support from the speech and language therapist and the autism outreach team. We also go for an annual review with a consultant paediatrician.
Fortunately for us we didn't have to fight for any health support and our son has continued to have his needs met by the relevant people.
The only problem we faced with support was a delay in getting help from the behavioural team, but by the time our son's appointment came through - about 18 months later - we had worked through it as a family and no longer needed it. On the other hand, the speech and language therapist was fantastic. She worked with our son weekly for 2 years and was a huge support to us as parents. She always had time for my questions and would spend time with us when things were tough.
We only trust family to look after our son. Play schemes say they are inclusive but staff are often not trained to work with children with behavioural or communication issues, and most do not have the ratio of staff needed for 1-on-1 support. Similarly, we were seen as a threat and met with some hostility when we questioned some of the practices that were taking place at our son's school. Many teachers do not want a child with special needs in their classrooms, let alone parents who want to be involved in their schooling!
Our son goes to a mainstream school, which we requested for him. He has excellent learning support assistants and as parents we know we can ask for help from the head teacher if we need to - she is very supportive of our son and the need for inclusion in mainstream schools. His teachers have also found the support of the autism outreach team invaluable.
Our son has a development delay of around 18 months and communication difficulties, but we've been really pleased with all the progress he's made. He continues to work hard at school and is able to count to 10, identify shapes and identify letters in his name. He knows the colours of the rainbow, the names of dinosaurs and how rain is formed - not bad for a child who has been labelled as having a severe learning disability! His speech has improved but it can still be a barrier for others, which can make him feel frustrated and affect his behaviour. However he excels on the computer and this is used as a reward for good work.
We are proud of his achievements and continue to be amazed at his development and involvement in school. Our feelings are not different to any other parents and we feel the same about our other child too! Our son's disability has had very little impact on our relationship with him - we are more protective and can sometimes be a bit too cautious but we treat him like we treat his older brother. Everything takes a little longer to explain but we try to encourage him to try new things and give him choices in all parts of his life.
Our son has a development delay of around 18 months and communication difficulties, but we've been really pleased with all the progress he's made.
Emotionally and physically it can be demanding, and at times you feel very alone. Our extended family have distanced themselves from us and only my parents and sister have contact with our son and accept him for who he is. Friends are reluctant to visit with their children for fear he will hurt them - they don't realise that he is able to play with them and would like to have friends of his own. He is treated very differently and this is extremely heart breaking for us and difficult to understand.
Our older son loves his brother but he will ask: ‘why did he have to have autism', ‘why won't he play football with me' and ‘why does he do the things he does?' He has real issues with other people's lack of understanding and has been known to say this very loudly when people stand and stare at us when we are out!
Our son has given us so much joy but we do have days when we feel overwhelmed by it all and we worry about what will happen to him when we are not here to protect him. It's a continual feeling and it can dominate your thoughts. We know that we will always have to be there for our son and ensure he is cared for, but as parents we talk to each other and share the burdens, and my sister has been a tower of strength. We have struggled with the idea of counselling, especially bereavement counselling, but we do not feel we have lost a child - we are happy with our son the way he is. Of course we would like things to be different, but they're not and we accept him as he is and love him for this!
We take each day as it comes and try not to think too far into the future - we know it will be hard work but we will continue to fight for what is right for our son. We see the positive side every day - he has achieved so much and continues to learn so each day brings us another achievement.
We are continually amazed at what he can do and how he can do it!
Paediatrician: a doctor who specialises in working with children who are ill or disabled.
Respite: allows you as a parent to take a break from your role as a carer.