My son was born extremely prematurely. I was 26 years old when I gave birth to him. I didn't have a clue. I also didn't have a mother of my own around to help me. I was newly married and besides my first husband, I was totally on my own. I was good at all the practical baby stuff but I didn't know then that I was raising a SEND (special educational needs and disability) baby.
As time wore on I knew that there was something 'wrong'. It's strange, when you have a premature baby they are born so tiny, so small and transparent - you know it's a miracle that they are alive at all. My son was born when I was 26 weeks pregnant (6 months to those that do months). He weighed 930g. He spent the first 3 months of his life on a neonatal intensive care unit. I didn't know it then but I had him early because I had an incompetent cervix.
There were days in the hospital when I didn't think I'd get to take him home at all. When I finally did take him home, I was so grateful that he was alive and out of hospital that everything else seemed totally irrelevant.
He had developmental delay, he was difficult to feed and he seemed to never sleep! I found it very difficult and it seemed that everyone else had these 'easy babies'. He was late to reach every developmental milestone including learning to speak. That didn't worry me much because they warned me about that.
When he was just three years old, the professionals around me started the process to get him a statement of special educational needs. These are now called EHCP's. They knew that something was definitely not right but 'it' didn't have a name or a label. I researched his symptoms very thoroughly with a very sketchy 2005 dial up internet connection and I decided that he presented most like an Autistic child. I was totally convinced of it.
So I went to my GP and he was put forward for an assessment. I knew very little about ADHD at the time. From what I did know it was a condition that affected naughty kids but that was about the extent of my knowledge. I felt it wasn't a nice thing and I was sure I'd heard that being diagnosed with it reflected on parenting. I'd read and heard some stuff but my knowledge was very limited. I also knew that kids were given drugs which all sounded very unpleasant.
I wasn't expecting my son to be diagnosed with ADHD because I was fully sure by that point that he was Autistic. At the end of the assessment I waited for the Consultant's conclusion. She told me my son was ADHD with Autistic Traits.
I can tell you now, I was not very happy. I kept trying to explain that he was Autistic but they just were not seeing that. They said they'd keep an eye on it but they felt his diagnosis was ADHD. There is not much you can say to a doctor when you are just a young mum! I don't think that I was taken very seriously at all as I am sure you can imagine.
I'll be honest I was mortified. The stuff that I had heard about ADHD came flooding into my mind. I felt angry that 'they' were trying to stereotype my son and me as some kind of wayward child and feckless parent combo. I went through a lot of emotions and none of them were very nice. I felt like this was definitely a bad thing for a child to be and I knew that there were a lot of not very nice things said about the ADHD by 'people'.
After a while, I resigned myself to the fact that having a 'label' was better than not having one and I had no choice but to go with it rather than against it and this is what I did. I was very anti medication as well. I felt it was wrong to drug a child. I still didn't think that it was the right diagnosis either.
In 2014 I was proved right when my son was diagnosed with Autism. I was told that under the old diagnostic process he would be considered as having moderate to severe autism as well. I was right afterall.
The fact that I was right afterall is not the point of this story. The point of this story is to share the way I felt about the diagnosis. I am sure that there are other parents who also don't feel overjoyed with the label because of the negative media coverage, myths, hearsay and general chit chat by people who are completely misinformed and don't have the first clue what they are talking about. I remember that I felt some shame around it at the time. I don't feel shame about it these days because I understand it fully but I didn't then.
I just want to say, I hear you and I feel you. My suggestion is to stick with it and learn about it from trusted sensible sources. There are numerous previous posts on this blog which might help you and links to other sources of information and support.
My son now has a dual diagnosis of ADHD and ASD. I think he's probably more ADD or type 2 ADHD. He certainly isn't hyperactive or badly behaved. When he was very young I think his sensory processing dysregulation and ASD looked very much like ADHD but it wasn't.
I do genuinely think that he probably has both but ASD is the certainly the primary diagnosis. Now I know that ASD and ADHD commonly co-exist.
I have done so many U turns with the whole thing, the more sensible and factual information I acquired on the subject. I've also done a massive U turn on medication as well. I am very much pro medication these days. It's been a process played out over many years.
I just wanted to share this really in case other parents with a newly diagnosed child feel the same way. If you don't feel that way then great, you are way ahead of where I began from!
Now I want to spend my time educating on the subject and putting right the myths about it one person at a time if I can. There is an awful lot of misinformation out there and the task is huge!