Maybe Knowing Makes It Easier

Hi! I’m Pippa from A Mother’s Ramblings and I’m a Mum to a 15-year-old daughter, Top Ender, and a 10-year-old son (Sorry, but he’s asked me to point out that he is nearly 11!), Dan Jon Jr. Along with my Husband, Flyfour, we live in Milton Keynes with our four cats in a house where we have to ask Alexa or Google to turn on the lights, rather than use the handily placed by the door light switches.

If that doesn’t give you a big enough insight into me and my family, then in nutshell, we love hanging out together, having fun doing every day things and generally live life as well as we can.

My family and I have known Emma and her family for well, a very, very, very long time (Almost ten years is a very, very, very long time!) and I’m really pleased to be here today, with a guest blog post with a little about my experience of Autism.

The day it was suggested that Top Ender had Autism, it was as if a cupboard that had all the junk and paperwork stuffed into it had suddenly burst open. Everything that had been squashed into the cupboard over the previous 14 years came tumbling out, pieces of paper floated around and I was left standing in the midst of it, looking at the mess on the floor, the empty cupboard and with a sense of dread that Flyfour and I were being left to sort this all out alone.

For Top Ender, having a name for what made her different, actually scrub that, for someone to recognise that there was something that made her different to her peers and for that something to have a name, gave her a sense of relief and normalcy that we hadn’t realised she had missed out on for the 14 years previous. Just like her bedroom floor, Top Ender didn’t see the mess.

So we started the journey of discovery, of tidying up and paperwork. As expected, we started the journey alone with CAMHS letting us know we would be placed on a waiting list for an appointment, but the Nurse who told us this, also admitted, he had no idea when this meant we would be seen, as CAMHS is so terribly underfunded and there are so many young people who need their help.

I went to the library and got out every single book about Autism. I used three library cards. I mean, I knew about Autism, I had friends who had children who were on the spectrum. I knew Bloggers who had children who had been diagnosed with Autism. Now, it was different. Just like when Dan Jon Jr was diagnosed with Type 1 Diabetes, I had a lot to learn.

The books did not help.

It was the SENCO at Dan Jon’s School I then turned to for help to make sense of the mess, we’d been left with.

The SENCO and I had known each other for several years, as she had taught both Top Ender and Dan Jon,  I had volunteered in her classroom, long after my children had left her class and this was all before she took over the SENCO role and we spent many hours discussing how the School and Staff could support Dan Jon with his Type 1 Diabetes. We had hung out together, we had worked together. We had inside jokes. The point is, she knew me, my parenting style, my strengths and weaknesses. She knew my children, really well and most importantly for me at this stage, she knew what Autism in all it’s different variants meant.

Sitting in her office, having poured my heart out, she said she was going to tell me the truth. It was what I needed, it was what I deserved and at this point, it was the one thing that nobody else was going to tell me.

“It’s going to get worse before it gets better.”

And she was right.

Over the next few days, weeks, months, as a family, we worked out what Top Ender’s triggers were. Just when we thought we had it figured out she stopped masking some of her behaviours and we started working it out all over again.

As we told our Friends and Family, we mostly found understanding and patience. That’s why she reacted like that. That’s why we didn’t do that. That’s why we did do that. The pieces of the jigsaw fell into place for almost everyone we know. However, we did meet with some, shall we say resistance. Over several conversations over several weeks, I got phrases like;

“No! She isn’t Autistic, she’s just Top Ender!”

“She’s special and once she understands who she is, she’ll feel more settled in her own skin and all the quirks will go away.”

“They try to label everything these days.”

I haven’t really spoken to that friend again. They don’t get it, they don’t want to get it. I hope I was never like that.

As time has gone on, I’ve come to see a lot of the ways Top Ender reacts in myself. I’ve come to the conclusion that I’m on the Spectrum too. I don’t feel that I need to be officially diagnosed, but just like Top Ender experienced, knowing makes a difference.