With our children we all hope once we have a diagnosis that we might finally have some help and support, but is this the case or just a nice dream?
We are all told or notice that our child is different to other children of the same age, whether it be lack of eye contact, no social interaction, sensory overload and much more. We all follow the same path to be diagnosed which for most is a very long and hard road and being passed around to too many medical professions, if you one of the lucky ones then sometimes your diagnosis is an easy one. But then comes the hard part.
We got our Asperger’s diagnosis first but the doctor thought Oliver might have ADHD as well so we went down the road of more appointments and assessments and then came the diagnosis of ADHD that was more of a shock for me, as it was something that had never been discussed as a problem Oliver might have, looking back all the signs where there but I didn’t know enough about it, Asperger’s I had because it has been mentioned to us and also once it was mentions I did the research.
Once you have the diagnosis what do you do, where do you turn too ? I remember getting Oliver’s and feeling hopeful we might start getting support and the statement school where going for but how wrong was I. We got ours and then the Educational Psychologist did an IQ test on Oliver and he came out average so they said that we couldn’t go for a statement and that he didn’t need a statement but he was behind and needed help in other areas, but school supported that, and we had to agree. Oliver was behind in everything but once we started medication with Oliver his school work improved because he was now able focus for longer this wasn’t a short process but over time it helped. Even today he still has major problems and needs a lot of support but he is doing OK.
How many of you have thought or been told you child needed a statement to never get one for some silly reason? How many of you have a school that doesn’t understand your child’s needs? Is there anyone other than you as a parent who understand your child’s needs?
Once we got our Asperger’s syndrome diagnosis we where told that a Autism Special Teacher would be going into school to help support Oliver, but this would only be once every 6 weeks, if Oliver had, had a statement this would have been every two weeks. This support is good but how good can it be once every 6 weeks or so and how long are they in school for that visit? You hope once you have a diagnosis that things will fall into place that school understand Autism and that they know your child so they are able to support them. I am grateful that this special needs teacher goes into school and can give Oliver support for however long or short, anything is better than nothing and he seems to like this teacher. She helps him with social skills which is a key for our children.
Other than this support there is no other support, your special needs teacher run an Autism course which I have to say I found very helpful in understanding a little more but once this course is complete there is no other support.
I have found parent support groups helpful. Berkshire Autistic Society run a parents support group once a month which is great but there needs to be more, I haven’t found any support for ADHD, with this day and age and how many children have these condition why is there a lack of knowledge and support?
It seems us parents only have each other to turn too. Coffee mornings are great and support groups on Facebook where you have a chance to chat to unload and too just talk and have someone not judging you and understanding you is a massive help.
As parents stay strong you all do an amazing job x