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

 

 

Overcoming assumptions, regression and being the girl she wants to be

I’ve mentioned in previous posts that Eliza was pretty much ‘written off’ by a pediatrician when she was 2-3 years old. They told us to “not expect much from her” and “She will never read, write, speak, have friends……” and basically decided that she would amount to nothing and shoved her aside. What happened next? We got a new paediatrician that actually saw her for the amazing, intelligent and beautiful child she was (and still is). This is just a little recap blog or a mini timeline if you like. To show that she has proven them wrong. I’ll share 3 photo’s with you and tell you what they are all about.

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Eliza, aged 2.5 years old

I love this photo of Eliza. She was two and a half years old, loving the sunshine in the garden and loving life. By this point she’d had a regression period and her speech had gone, her mobility seemed to reverse and she struggled with walking and her fine motor skills deteriorated fast. Eliza had weekly speech therapy and attended many appointments with speech therapists, pediatricians, doctors etc to try and discover what had caused her to lose her speech (eventually at age 3 she was diagnosed as ‘Autistic with moderate-severe learning difficulties’). It was at this age that the pediatrician told us nothing but negative stuff. She’ll never………. She won’t…….. She’s not going to……  and looked at me with sympathy as he shook his head and wrote his report. (As above we never saw him again, we got a new peadiatrician). At this lovely tiny age Eliza was starting to learn PECS (Picture Exchange Communication System) and Makaton signing so she could communicate her needs. One of her favourite activities was throwing the PECS folder at the speech therapist (who learnt to duck really fast). She learnt signs fast and at school she remembered things well. She loved books and would look at them for hours with a huge smile on her face. Eliza was a fun loving, feisty little diva and she loved Mickey Mouse, iPad’s and chocolate biscuits.

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This is Eliza in 2014, aged 5 years old.

We jump to this next pic of Eliza, aged 5 and holding a trophy she received at school for speech and communication!! That photo was taken exactly 4 years ago today. Her Makaton skills were fair, her PECS skills pretty good (and yes the PECS folder got thrown many a time, even out of the car window once!). But she also had speech. SHE COULD TALK AGAIN. That pediatrician was so wrong to say she’d never speak although he probably filled both Eliza and myself with extra determination to prove him wrong. And she did, she refused to be brushed aside and ignore all these negative assumptions. Eliza’s speech started to return not long after she turned 4 and it just kept coming.  Her love of books was growing and she’d come home from School with new reading books each week. It was the most pleasant and wonderful surprise finding out how well she could read. Once her speech returned and kept improving it soon became very clear that she had a great memory and was very academic. She knew shape names that even I didn’t know, she knew about the moon and the planets and she’d recite stories back to me that she’d read at school. So there she is at age 5 and raising her communication trophy as high as her little arms could go with a look of pride and determination. Eliza was still a fun loving, feisty little diva and she still loved Mickey Mouse, iPad’s and chocolate biscuits.

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Eliza age 9

This last photo was taken a few weeks ago. A nine year old Eliza who speaks really well despite her speech and processing delay, has a brilliant sense of humour with a slight sarcastic edge to it (no idea where she gets that from……….). Eliza reads at age 10-11 years and loves books, her latest favourites being ‘Captain Underpants’ and also ‘Diary of a Wimpy Kid’. School informed me that Eliza can even read music! She’s learnt to play a brass instrument as well as piano, she’s taken part in a table cricket competition and is quite an academically able child (despite what they said 6 years ago, they were so wrong!). She never stops trying to write, her fine motor skills need lots of work but she always tries hard. She has friends and loves to play.  She still really likes shapes and patterns and has a real interest in Science and Religion (she loves reading her children’s Bible). It’s apparent that Eliza still has an interest in space as she recently woke me up at 3am in the morning to ask me if it was possible to cry on the moon! (Thank You Google for your help that morning). Eliza appears in a book that was put together by Chris Bonnello who runs Autistic Not Weird where she is one of 150 children that tell the world what she loves most about life. This year she has also become a young ambassador (with a little blogging help from me) for a clothing company that promotes Autism Awareness and Acceptance Just Ausome (She’s now on their website). And yes Eliza still loves Mickey Mouse, iPad’s and chocolate biscuits and is also still a fun loving and feisty not so little diva (she just keeps getting taller!).

Some things, like the loving chocolate biscuits, never change. But that doesn’t mean that nothing else will ever change too. Children grow and develop at different paces, there is no crystal ball to predict their futures and they certainly shouldn’t be written off at such a young age. I’m fairly certain Eliza will keep proving them wrong. I’m even more certain that she’ll have as much fun in life as she can and she’ll be the person she wants to be, not the person they assumed and decided she’d be back when she was younger.