What a difference a diagnosis makes

When Eliza was diagnosed with autism, it was a relief. A relief because I knew she was autistic anyway but that single piece of paper with her diagnosis on was a key, a key to open the way to the specialist education, therapies and interventions that she needed. She was only 3 years old but early intervention is so important although not always available and the sadness and reality these days is that support services are being cut daily and budgets slashed so many children are now being forced to wait years for an appointment let alone a diagnosis. I know she was diagnosed at the ‘right’ time both personally and when all the services she needed were at our disposal. We were some of the lucky ones before the SEND crisis started spiralling out of control. The reality these days is that children and adults are being failed. They are left to wait, made to fit in, expected to adapt without support and this is damaging.

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When Eliza was diagnosed, she had already been using Makaton sign language and began using PECS (Picture Exchange Communication System) to aid her communication. Her favourite word was ‘no’ which she could speak and sign perfectly! But when out in public, strangers would often stop and chat in the supermarket queue and many quickly judged Eliza for not replying to them, assuming she was rude. Often when I explained that she had very limited speech and was autistic and needed time to process things, we’d get replies including “She’s just trying it on, she’s fooling you”, “Oh but she’s a girl, she can’t be autistic” and “I’d not put up with that, I’d have her talking by the end of the day….”. Often Eliza would reach for the PECS cards I carried in my pocket or on her bag and point to pictures of what she wanted or what she’d seen. She was communicating yet the sight of these picture cards used to make people turn away and whisper, some would just stare at her and loudly ask “Can’t she speak then?” which would then send a lot of eyes towards our direction and often lots of sympathetic head shakes. The reality is that a lot of people do not understand autism, communication aids and or anything that they don’t see as the ‘norm’ and when they see a child or adult that is different, attitudes are usually ignorance or pity.

When Eliza was diagnosed, we lost contact with a lot of friends and even some family over the following couple of years. The child that had been attending parties and play dates was suddenly left out, despite the fact she’d never been anyone or anything different to the beautiful and funny girl she always had been. But diagnosis somehow made a difference. Suddenly Eliza wasn’t Eliza anymore to them. She was ‘the different one’ or ‘the autistic one’. Whether through ignorance or lack of understanding we were excluded. Eliza was excluded. Some family didn’t understand (some didn’t want to try to either) and we were given the “She’ll grow out of it, you’ll see” and “You read about this in the papers, parents getting their children labelled so they can claim extra money”. YES THAT ACTUALLY WAS SAID TO US! Family seems to assume that as they are family, they can say whatever they like without repercussions. Just because we are related doesn’t give you any right to be rude, ignorant and judgemental. The reality is that everyone has their own expectations of what is ‘normal’ yet many don’t wish to understand or at least try to realise that, actually, Eliza is perfectly normal thank you very much. She’s just different in the way her mind works. A diagnosis opened some doors for her regarding therapy and school but it also closed some with friendships and relationships.

When Eliza was diagnosed, it didn’t stop her doing any of the following –

  • Making friends and maintaining those friendships.
  • Learning to swim.
  • Reading at a level 2 years above her own age.
  • Taking control of her own anxiety and facing her fears of being in theatres, cinemas and restaurants.
  • Learning to play a brass horn and also learning piano.
  • Telling awful made up jokes about farts and burps.
  • Becoming an Ambassador for an Autism Awareness & Acceptance clothing line Just Ausome
  • Being asked by Chewigem to review and share feedback about their products.
  • BEING ELIZA, BEING DIFFERENT AND NOT LESS!!

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Thanks for reading. This was a prompt about ‘A reality I’d like to change is…’ from ‘Finish the sentence Friday’ hosted by Finding Ninee and Sporadically Yours

 

 

The end of the summer holidays means the start of another amazing school year

The summer holidays have ended and a new term has started at school. Where did 7 weeks of summer go? I seem to have blinked and missed it! We have had some fun though. We met up with some friends, had a few play days, trips to the cinema and various parks. Eliza had her dental surgery too, her first anaesthetic and she did really well and coped amazingly. They removed six baby teeth in total, all refusing to come out on their own and two of them so worn that the nerve endings were becoming an issue and stopping her eating. As soon as these teeth were removed, the new teeth were already showing. Oh it is such a joy to see Eliza eating and drinking again. The teeth have been an issue for a few months as we waited for her operation date. She’d lost 8lbs in weight in that time and now the teeth are sorted she’s already gained 4lbs back and is loving her food again. Eliza did extremely well in hospital although a few times she was angry that she couldn’t have something to eat or drink, she’d been nil by mouth from the night before. Even as she went under the anaesthetic, her eyes closing, she whispered “I want sausages and chips…..”. The first thing she said as she woke up afterwards was “Why are we not in the cafe yet?”. She did so well and she was so grown up about the whole thing. She’s really coping with her anxiety a lot more these days. And yes, on the way home from hospital we collected sausages and chips!

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A very sleepy Eliza after her operation this summer. The R&L were written on her cheeks by the dental team so they got the correct side no matter where they were standing etc. But if you ask Eliza, she says the letters R&L were because she is ‘really lovely’.

Last week she was back at School on Thursday and Friday. She was calm and relaxed and rather excited. Her School is pretty amazing, they really ‘get her’ and have helped her to grow in confidence as well as acknowledging what an academically able child she really is with the correct support in place. It was great to see her return to school so happy and fairly anxiety free. Later that morning on the Thursday, a memory came up on my timeline app on my phone. A photo of Eliza returning to school last September. I was so shocked at how much she’s changed. She’s lost the last of those baby face features, gotten so much taller and just suddenly looks so grown up!! Here, see for yourselves….

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One year apart! What happened? Did someone feed her some kind of growing potion…..?

A few years ago I used to carry her in to school crying and anxious. Often I’d collect her at the end of the school day anxious and quiet. The last year at that school was just awful. Wrong class, wrong teacher and a bully that made her life miserable for months (verbal and physical attacks). Her academic ability was not understood and she was so bored and frustrated. Within weeks of being at the school she’s at now, she was already calmer and happier. It was clear her academic levels were so much higher than the previous school thought and Eliza made incredible progress fast. She loves her lessons and has recently shown an interest in music. She learnt to play a brass horn instrument and after only 8 weeks took part in a concert at school for the parents to watch. More recently she has been learning piano and really enjoying it. Her teacher tells me Eliza can read music.

Eliza going back to school so calmly and happily shows how much she really loves being there. The school is amazing and every time she returns to it I know she’s going to be happy and well supported. In 2 years time she’ll start high school but let’s not go there yet! Seriously though, I can’t get over how much she’s grown!!

 

This was written for a prompt in ‘Finish the sentence Friday’ hosted by Finding Ninee and Sporadically Yours