I’ve been quite lucky, I think I’m quite a confident person in certain aspects maybe, if it was a meeting for myself I wouldn’t be, but for my son I know I am his voice I have to be the confident one. 

When I go to a meeting, I have to think if I could stand and do a welcome meeting for over 200 people when I worked as a children’s rep, I can talk to one or two people. I have to be confident for them to take me seriously and I have to be the one that’s not taking any messing for them to know I mean business! 

Maybe it’s helped that Z was an IVF baby I’ve been at meetings since before he was born. Fighting for him from the start. 

When I knew there was a problem the first person I turned to was the heath visitor. She brushed my queries aside with the answer “Oh he’s young. I’ll see you at 18 months.” I knew something wasn’t right, I wasn’t taking the word of someone who looked younger than me, that he was ‘fine’. So I went to the doctors and health visitors. Here they were torn. One agreed with me, one told me stop comparing, and you have a new health visitor she’ll be in touch. 

She got in touch, came out, and agreed with me. Then she started naming people that I knew of who could help. Luckily I’d worked in the early years sector before Z was born so knew most of them. I had all the help, I never had to fight, it was as if I knew what was the next port of call and I went with it, smiling saying yes I know what happens next, (Google was a good friend here!).

We were lucky with portage, they attended the first Pediatrician’s appointment with me, I wasn’t alone, portage do this sort of thing all the time right? Then when the Pediatrician also agreed with me I knew I was right, I knew Z had autism and I was going to get a diagnosis. It wasn’t all in my head. An education psychologist visited, she agreed that yes it looked very likely Z has autism and would be diagnosed. They asked me where I wanted him to go to school, I said a special educational needs school as he’s not being moved from one school to another and end up there anyways he’ll start there. That’s where he started. 

Lately, there’s been two ‘fights’, one to get him pull-ups. Some may say I’m rude, but it’s what Z is entitled too. He can’t tell them I can. I remember reading somewhere before entering a room move the chair, it’s shows confidence and shows your not willing to just sit where they put you and take what they’ll give you. I took in facts, I took in pictures, I had done my research. “Ok,” she told me, “the NHS in Wales don’t do pull ups.” To me the NHS is the NHS and I argued that fact, why should my son not have pull ups because he lives in Wales and not England? If he’s entitled to nappies what’s the difference? To be told that they don’t do them, he can have them when he’s being toilet trained. He would have them in the next two weeks if he saw an over full pull up! I held my head held high, I wanted to go in all guns blazing but I stood my ground. Why should we as parents accept what people want to give us, mainly the cheaper option? It’s not wanting things for free if these things are available I know I wouldn’t be the only one who would buy them. When I asked the lady would she like to lay on the toilet floor to be changed she said no, then why is it good enough for my son. 

Next up was a social worker. At first I didn’t want one. Then I thought Z is a vulnerable child, he’ll always be a vulnerable adult, in 10 years I may need help, who will help the? Then he’d drift off into adulthood alone. 

I had the carer’s assessment. I chased it up. I was told no. I asked why, I asked to speak to the manager and I wanted to know how they made that decision. If it was during school time, telling me they had gone off a school report I would have accepted it, but school holidays? No! 

So in order to meet the criteria I asked for another education physiologist report as his was done when he was two and a half years he’s now nearly five. Again I did my research; I was allocated a social worker. He never had another education physiologist report.

I thought to myself while I was researching; do these things even exist? Do people get what I’m asking for? If so, I take notes, I save things to my phone I know I’m right. I think that makes it that little bit easier. Like I said if I was fighting for myself and they told me no, I’d accept it even if I knew I was entitled to it, for my son it’s different. I’m hoping that I won’t have to fight for what he deserves, what he’s entitled to but he’s only five, I know I’m not always going to go through everything plain sailing. I’m planning on a few fights as he gets older, everyone’s always told me you have to fight for everything so maybe mentally I’m prepared, and when I don’t fight things just fall into place! Maybe now things are changing a little autism is more out there parents now won’t have to fight as hard as parents did just a few years back? 

Read more of Jo's blogs at First Time Valley Mam