We were prepared for our son's diagnosis - we knew before they told us. We knew enough about autism to get us through the first few weeks and have learnt about it daily ever since. We're not quite experts but we're getting there!
The numbness we felt when we first heard the news was followed by acceptance - he is our son and nothing changes that. You need to take time to come to terms with it all, to be angry and upset, but then you have to move on. Life is challenging, tiring and exciting. Milestones you and I may take for granted take on new meaning. It's amazing how excited and happy you can be about the smallest of things, it's truly inspiring!
We had the support of a SENCO from when our son was first diagnosed. She worked with him at his private nursery and continued until he started at mainstream school. My husband and I were aware of the statementing process and knew where to find all the relevant information and support. As a family we discussed our fears, hopes and thoughts about our son's school years for what seemed like an eternity! We debated at length whether he should attend a special school or a mainstream school, and whether he should attend the same school as his brother or not.
Milestones you and I may take for granted take on new meaning. It's amazing how excited and happy you can be about the smallest of things, it's truly inspiring!
We were sent the local authority's statement procedure and the SEN code of practice, which was really useful as it enabled us to identify what support we could receive. Information was also sent to us about the parent partnership service and the support they could give us to complete the necessary paperwork. In the end I completed the plan with the help of my husband, my elder son and support from a friend.
We had to request that our son went to a mainstream school - it went to a panel, where it was agreed that he could start the statementing process and go to our chosen school once this had been agreed formally. Our son was involved as much as possible. He was only 3 at the time, but we took him to our preferred school and observed how he reacted and how others reacted to him.
We were given a draft statement after our son had been assessed by an educational psychologist. We were then given the opportunity to put forward our views and thoughts about what level of support he would need. The process is draining and it can be demoralising - it's hard to write down all the negatives about your child, but if you don't do this you won't receive the level of help you need.
The best advice that was given to me was that I needed to ensure he had supervision at break times and lunch times. This had not even occurred to me - I assumed it would be part of the package. How wrong was I? I requested this and explained why I felt it was fundamental to him and to the school. You have to remember that you have a duty to protect the other children too, especially if you know that your child may pose a threat to them in certain situations! We are lucky that he now has two wonderful learning support assistants, a form teacher and head teacher who all work with us to ensure he has a meaningful education and that every opportunity is given to him.
You have to remember that you have a duty to protect the other children too, especially if you know that your child may pose a threat to them in certain situations!
We have made good friends with one of the other parents at the school who has a child with Down's syndrome. In the beginning, the other parents were very unsure of us and were not friendly towards us or our son. When he first started Reception life was very difficult for us all - he found his new environment confusing, which was not helped by the reactions from other parents.
We got strange looks, whispers and comments like ‘children like him should not be allowed into schools.' When we walked through the playground it was as if they were frightened by my beautiful little boy and thought they would catch autism if they touched either of us. There were many times I Ieft in tears, wondering how can people be so cruel. Luckily the situation has improved greatly since then and there does seem to be an acceptance of my son.
We don't receive any support with after school clubs or extended school services. We have to ensure that one of us is able to pick our son up from school at 3.20pm as the after school facility is not able to deal with him appropriately. School holidays can be difficult - our elder son attends holiday clubs but again they are not geared up to deal with support needs. Our son receives information about out of school clubs but we know he only has them because everyone else does. We are not sure what would happen if we returned the form requesting that he attends - maybe we should?
Our family doctor is good with us all as a family and he tries hard to involve our son in conversations, but we feel he is not sure what autism is or how to deal with it. We have noticed that when we have an appointment with him there appears to be a focus on the strain we may be under from having a child with a learning disability, but we can't really blame our son for a common cold!
We were given information about some parent support groups, but this does not appeal to us a family - we are happy to work through situations on our own or with support from friends. We were offered respite when he was first diagnosed but not since. It's not something we need at the moment, although we would really like a babysitter who can deal with his special needs but who can look after his brother too!
Life always feels rushed. We never have enough time and we're always hurrying from one place to another.
Life always feels rushed. We never have enough time and we're always hurrying from one place to another. We do spend time together reading books, shopping and going for walks, and our son has access to the special needs toy library and the support of the autism outreach team. We have a special needs adventure playground near us which we visited once, but our son didn't like it and we haven't been since. He comes to the local park and playing fields with us and just joins in with the others when he feels like it.
There is very little time for visits to grandparents or to my sister and her family. We tend to talk on the phone and try to get together whenever we can - but it can be difficult to arrange visits as so much depends on what mood our son is in and if I have the strength to organise it! There is also little time for me and my husband. We have full time jobs and sometimes have to work evenings and weekends, although fortunately we work together so I get to see more of him. We don't go out socially very often as babysitting is a bit of an issue - it's difficult to find willing relatives and our daughter is now at university, although she will sit with her brothers when she's home. My husband and I meet for lunch occasionally, which is really important as our home life can take over everything and we need time together.
Sometimes it feels like we have his and hers children. Most of my spare time is spent with our younger son, who is definitely a mommy's boy. If I'm not about he is more than happy to spend time with his dad, but I am his first choice! Our elder son loves football, so we invest time in this activity for him and with him. His Dad takes him to play football during the week and at weekends, and has taken on the role of deputy coach for the team so they can spend quality time together.
As a family we are very open about our feelings and we talk about any problems or issues we may have. Our eldest son is always asking questions and he supports us when we are down. He is his brother's greatest ambassador and his best friend! We get support from our close friends and family, and we take each day as it comes. We don't plan too far ahead because life changes constantly, and brings with it new challenges and new experiences for us all.
Having to support our son with his disability has only enhanced our relationship - he is my constant companion! However I know that this needs to change in the near future for both of us. He is so dependent on his immediate family - we are his voice and his reasoning to all around him.
I only hope that in the future we can continue to cope as a family with the ups and downs that having a child with a learning disability brings.