We wanted this website to share the thoughts and experiences of families living in Midlothian and not just about signposting to events or supports. This article was contributed by a dad whose son was recently diagnosed in Midlothian – he offers thoughtful insight into the journey he’s just begun, the highs and lows, and what has helped.
We’d love to hear from anyone with whom his writing resonates, and would like to thank him for his time and experience in reaching out to others.
Cameron is a happy little boy who turned 6 in February. Cameron, like most kids his age, likes to have fun. He likes to go out with friends and play, and whether he’s in the garden or in the house, he is always happy to make things up to make life more exciting!
At the start of this year (2018) Cameron was diagnosed with Autism Spectrum Disorder (ASD). At first I was not sure what to make of it all, but I have been on a steep learning curve to discover what Cameron needs in the way of support to help him manage certain situations.
The start of the process was a meeting with the speech and language therapy (SALT) at our doctor’s surgery. After this initial assessment, they wanted to see him in a normal environment which took the form of a visit to school. As we did not know what to expect because we had very little information at this time, we went with it with not to many questions. So the SALT team came out and observed Cameron in class and picked up on several traits which gave them slight cause for concern. As a result of these observations we were referred to the paediatrician and formal assessment began in full for Cameron.
Whilst Cameron, my wife and I were in our first meeting and talking with the paediatrician, Cameron did not sit still. He was talking away the whole time and climbing about under chairs and playing with the toys and colouring in the entire time. At this point we were informed of the next steps, a questionnaire which was to be sent to ourselves and to the school. Upon completion of these there would be another appointment scheduled to continue the assessment process.
In between appointments Cameron was sent for a hearing test as he would often continue a task after being asked to stop and they wanted to rule out any issue with his hearing. I did not attend this assessment but when I got home that night my wife informed me of what had happened. The test started out well and after several sounds Cameron turned to the lady doing the test and said, ‘You have already done that one,’ as each sound was repeated: he was getting bored and wanted to move on to something else. Needless to say it got a laugh from all concerned as well as myself when I was told about it.
So after several weeks of not knowing what was happening as you are given very little information on the whole process, we were given our second paediatrician appointment which I did not feel the need to attend as we thought it would be much like the first one. We had already been told of the results of the questionnaire: we had scored Cameron severe and the school had scored him even higher. So as I was working away my phone rang and it was my wife, she told me that they had given a diagnosis and that Cameron had ASD. I felt guilty and upset that I had not been there when the diagnosis was given, and I could tell my wife was also upset. By this point we had done a bit of research into ASD and talked to friends who have kids with ASD and we thought that was going to be the outcome. At this point they then hand you a pack which gives you various information booklets including the one about the assessment process which would have been nice to have had at the start of the process so we would have known what to have expected.
Before Cameron’s diagnosis, and even more so since the diagnosis, I have struggled. I am not ashamed to say that. There is a big stigma attached to ASD which does not help. It is more and more common these days as they know what to look for and I think people are starting to come round to it not being a big issue.
So like I said Cameron was diagnosed at the start of the year, and since then we have been through a wide range of issues with him; there have been a lot of highs and a lot of lows. Since going back from his Easter holidays Cameron has had really good reports from school. He still has his moments and has also had a couple of rows for misbehaving. The misbehaving seems to be more when he is having fun and being encouraged by other people. However, overall, he is doing well. He still has his moments which I have to just walk away at times as I get frustrated with him and start to get annoyed with him and get my wife to deal with him. I think that women deal with this situation better than men do, at least in my house that is the case. I don’t see the triggers and don’t react in the correct way to defuse the situation before it becomes too heated on my part. I also feel that men in general do not like to admit defeat and as a result do not talk about things. Women on the other hand seem to have a better network as they are willing to talk about stuff more openly and as a result get more support from friends and others.
I believe if men were more open and shared their thoughts and experiences, there would be more acceptance of it as a whole. Like I said, I have struggled and found that I start to shout, which does not help the situation at all, in fact it only make things worse. Over the last few weeks I have tried to stay calm and speak to Cameron at all times and not go off on one at him. It might just be a coincidence but my change in behaviour has also coincided with Cameron’s change in behaviour. He even came home the other day and asked for chores, which he has done for about the last ten days straight. It is only small things but he now gets upset if he does not get to do them. We are looking to increase how many he gets and see how we go but it will be a slow steady process.
One thing we have found works really well with Cameron is consequences and rewards. So we have set him goals for school and he seems to be rising to the challenge with this. I feel better as a result, which in turn keeps me calmer and in turn keeps Cameron doing well. I would also like to thank the school for being so good and patient with Cameron as I know there have been some really tough times and my wife and I know it can’t be easy for the teachers dealing with his needs and the rest of the class all the time.
I would also like to say what a great job the after school club Cameron goes to have done with him. Over the last few months the staff have been undertaking autism awareness training at a basic and advanced level. This is not just for Cameron but for other kids who attend now and in the future which can only benefit kids in the future.
I have been keeping my emotions in check but it is hard when watching things on the telly that involve a father and son and I sit there wondering if I will have that with Cameron. I really hope so and I hope I can continue to keep calm for his sake and we can both help each other as we go on our journey together as a family and as individuals.
The one thing that has never changed with Cameron is the fact since his wee brother came along two years ago he is the only one who can snap Cameron out of an episode no matter what he is like. We can only live in hope that this will not change as the boys get older.
I hope this is of help to others as I have found it to write and it also encourages other do similar. There are lots of us out there and we can all help each other out as long as we are willing to talk about it.