Thursday, 22 June 2017

The One With The Nuclear Fallout (39 months + 11 days)

It is Thursday.

Yesterday, I sobbed, I screamed, I spent £60 on a yellow jacket that I have coveted for several weeks, booked a 10k in Durham for next month, Piglet got a new Paw Patrol toy, bag and hat (this is what happens when I get a credit card increase and "bad" news on the same day), and we went to bed at 7pm. 

And when I woke up, it was 1:30am. And it was Thursday. 

We're giving potty training another whirl at the moment. On Tuesday, I promised Piglet that she could have anything she wanted if she did all her wee wees on the toilet and she asked for a pink bike. Since then, she has only had two accidents at nursery, so it seems to be working. Because she is fine. 

She saw me crying after the hospital yesterday, wiped away my tears, gave me a cuddle and asked if I was OK. Because she is fine.

She gave me a big kiss and a hug when I picked her up last night and told me she loved me. Because she is fine. 

She jumped in bed next to me and insisted that she was squeezed as tight as possible (this is the only way she will fall asleep) and....that can be autistic. But you know what? That's fine. 

Piglet isn't autistic. Piglet is Piglet. Piglet may end up being on the autistic spectrum but it will just be part of who she is. And after the stories I have read this morning, that's fine. It is fine. Autism isn't understood by society. I don't fully understand autism. But you know what? I'm probably on the spectrum. You're probably on the spectrum. We're all on the bloody spectrum. And....it's not Piglet's problem. Nothing has changed, or will change for her. It is just being made apparent to me. So I need to get over myself. 

Nursery said Piglet was off yesterday afternoon; that she was in a really odd mood. And honestly? I'm not surprised. Imagine sitting in a room for an hour with two people talking about you in front of your face- how would you feel? She's sharp as a whistle when it comes to understanding what you're saying, and that can be easy to forget. 

The health visitor isn't trying to set me up, She's trying to help. The pediatrician isn't telling me there's something wrong, she's telling me that there's something different. 

For anyone else in this situation- don't just read literature. Because it uses language like "disorder" and "delay" and other negative words that... aren't necessarily true. Read people's stories. Read their experiences. And you'll have a totally different perspective on the situation. 

I've been fighting any and all medical diagnoses around Piglet. I'm silly, really. I think in my mind, by resisting everything, I was fighting for her; I was defending her corner. And I thought that by going down this path, it would mean her life would be more difficult. But...it doesn't change anything. It's just a word.

The real fight is against what most people believe autism is. Myself included.

So. It's Thursday. What should we all do today? We should buy beautiful yellow jackets. Because life is short. We should educate ourselves. Because ignorance is dangerous. I myself am going to start looking at the best methods for teaching children on the autistic spectrum. I'm also going to be serving pints with a smile to alcoholics at 11am. The most important thing we should do today though? We should hug our babies as tight as we can. Our happy, funny, loving, unique babies. Mine's perfect, and I'm sure yours is too.

p.s. Baby cat fell out of the bathroom window whilst we were at hospital yesterday so I returned home to a very soggy wet cat stood by the back door feeling sorry for himself. This was the highlight of Woeful Wednesday, and has more than made up for the fact that he continually poos on the floor and gave Adelaide a hysterical pregnancy.  


  

Wednesday, 21 June 2017

The One With The A-Bomb (39 months + 10 days)

Today is Wednesday. Many Wednesdays have happened since I last wrote anything. Many, many, many Wednesdays. If I'm being honest, whilst Prozac helped my mood (or at least I thought it did) it definitely stifled my creativity.

In all those Wednesdays that have passed, we've had exams (good), birthday parties (also good), army applications (disappointing), new medical diagnoses (not so good) and trips to A and E (terrifying). I am no longer on Prozac since I needed a medication review before the doctor would prescribe anymore and I ran out in the interim period. Hence, I decided there was no point coming off them to go back on them again. My head feels clearer. I feel. Isn't that funny? I wouldn't have said that Prozac had numbed my emotions at all but retrospectively, I can tell you that it did. Sure, I can feel sad now; but I can also feel happy. And excited. And anxious. And determined. And frustrated. And elated. And irritated. And motivated. And you know what? I prefer it this way. Life is all about feeling. Why the fuck would you want to be numb all the time?

I've also been diagnosed with anaemia and a severe vitamin D deficiency which is why I felt like sleeping for 20000 hours per day, so I now have to take approximately 613 pills per day. Piglet knows about these pills- "Mummy's medicine". Piglet has been told not take these pills. Piglet ignored this instruction and took two of my iron tablets. Which resulted in a speedy trip to A + E (prior to this, my parent's dog had also tried to eat my iron tablets- honestly, they taste disgusting, I have no idea why everyone is so keen to ingest them). Thankfully, both Piglet, and the dog are absolutely fine. 

Scratch that last sentence. 

Piglet had her pediatrician appointment today. The one that the Health Visitor had referred her for because she thought she was autistic. Honestly went into that meeting expecting the Pediatrician to say that Health Visitor was a crazy bitch and Piglet is fine. And...that's not what happened. 

Went through everything, she watched Piglet play; I even lied on some of the questions. Not intentionally. But I lied. She asked if Piglet liked to collect things. And I said no. But she does. She collects all her dummies. She likes to have as many dummies as possible at all times. I'm not talking a spare or two, I mean seven, eight, nine dummies. That is an autistic trait.

The fact that her left foot points inwards when she walks. That is an autistic trait. 

The pediatrician said that she doesn't have enough to make a diagnosis but she can't discharge her because she can't say she's "fine". Can't say she "OK". Can't say she's "normal". She's going to send a specialist into nursery to watch her play and then we will review everything. If the specialist has enough evidence at that point she will be given a formal diagnosis of autism. If not, a second specialist will view her, and assess her for autism. At no point was their any mention of her being classed as "normal" by any of these people. From the conversation that ensued it seemed to be a case of the "professionals" have decided that she is autistic and now they are simply gathering the evidence to support their case. 

I've avoided reading anything on autism prior to this point. Which is weird, because usually I like to know everything about something if I am to encounter it. And I think the reason I've been avoiding it is because I've been petrified that I will be reading about Piglet. I've been scared that every single sentence that I see will be her. 

Her speech is definitely behind. I am not arguing that point anymore at all. It's just that I don't realise it until I see her with other three year olds. She will speak in sentences but half the time I have no idea what she is trying to say. It doesn't help the situation that whenever we go to hospital she refuses to talk point blank. 

So. Piglet is autistic. Not formally. Not yet. But whether I believe it, and whether she actually is no longer matters it seems. They've decided that she fits the criteria. And she probably does, and I'm just going to have to come to terms with that. 

1% of people in the UK are diagnosed as autistic. In 2014, there were 695,233 live births in Britain; roughly 6,952 children born that year will therefore go on to receive an autism diagnosis. Why does my Piglet have to be one of them? It's not fair. It's not fucking fair.

I keep thinking it's my fault. Maybe it's because of the glass that fell on her head when she was really young; maybe it's because of when she fell off the bed; maybe it's because I was at work all the fucking time forever for that year of hell. Maybe I'm just a really, really shit mum. 

I'll never be able to think how she thinks. I'll never see the world how she does. And it's so, so, so, SO shit. And unfair. 

But. There will be many more Wednesdays after this one. And since this diagnosis now seems inevitable, I think it may be time to read. My baby is going to be autistic. And I want to know exactly what that means for her.