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.

A stranger just called me a rubbish parent

My Monday morning started as it always does. The children were fed, clean, dressed and had gone to School and nursery. I decided to do my food shopping this morning rather than take Noah with me later (otherwise I seem to spend so much more when his little eyes and hands accompany me…..). I gathered everything I wanted, pleased that everything was available and I didn’t need to go anywhere else on the way home. I saw one of the usual cashiers that often chats and is really friendly. She asked how the children were and I said they were great and that the’d be very excited to see the ice creams later. As I packed my car a woman approached me, I’d say a similar age to myself but I’m awful at guessing peoples ages. I had no idea who she was and assumed she was after directions for somewhere or perhaps I’d dropped something and not noticed. No. She was about to make me feel like the world’s worst Mother in the world!

The woman, in a fierce and judgy tone, told me I was buying too much junk food for my children. That I was ‘Killing them with kindness’. That I should be buying healthier snacks, not given them chocolate, crisps, ice creams and that I should be ashamed of myself for the amount of ‘rubbish’ I was packing in my car and perhaps that highlighted that I was a rubbish parent!. Shocked, I took a few minutes to process what was happening. I’d never seen this woman before in my life and here she was ranting at me about my shopping and my children! I’ll add a photo of what she was ranting about and then I’ll explain what happened next.

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This was some of my shopping today. This is what led to a complete stranger ranting at me in a shop car park.

Yes my shopping includes ice creams and ice pops.

Yes my shopping includes crisps, sweets and chocolate.

Yes Eliza eats chocolate cereal some days.

Eliza also loves fruit and eats some every day.

Eliza actually has a fairly good intake of food, even if limited on what she likes.

The majority of stuff in that photo is for Eliza. Which I told the woman. I also told her that…… Eliza had been ill lately and with the added tooth issue of last week, she’d dropped weight. Eliza is a slim girl anyway and she’s also a daily stimmer (flappy arms and legs) meaning she uses up a lot of energy and even on a ‘normal’ day, she needs more calories. Eliza has sensory and dietary issues and her diet is so rigid it is hard to get calories and good fat content in to her. Yes the junk food isn’t ideal but Eliza has a dietitian who agreed that for the time being, calories and building her up is a priority even if it means junk food that she’ll eat (Eliza will not eat or drink the calorie boosting milkshakes, yogurts etc so we are limited with what she will have). Even the dentist is aware of Eliza’s dietary issues but instead of judging, he just offers advice on brushing and certain toothpastes for her. As of today, Eliza is less than 2 pounds away from being classed as ‘underweight’ and looking skinnier than she ever has. I’m not killing her with kindness, I’m doing my best to help her recover and be well again. I’ll stop there because the rest of what I said included the phrase “So please take your judgy attitude and shove it………..”.

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These pictures were taken just over a week apart. Even though her pose is different and her hair is up in one, you can see how much weight she lost in around 8 days. (The pink one was taken yesterday)

Eliza’s diet may be pretty crap. But we’re working with people that understand her and her issues around food. It’s not easy trying to help her maintain or gain weight when she is so limited food wise and stims , not to mention anxiety popping by often dampening her appetite. I posted some photos from the weekend sunshine fun on my private Facebook profile yesterday. I almost didn’t as even I was shocked to see her looking so thin. But I’ll do what I can to help her and I have good support helping her. School are also pretty awesome at letting me know her food and fluid intake and I’ll be in touch with the School nurse this week to as them to just be aware of everything.

Amazing how your day can start off well and soon take a dive because of a stranger. Am I a rubbish Mother? Well, I certainly feel like one this morning.

It’s all about Eliza

I’m a member of a lovely group that blogs weekly to various sentence prompts and ideas and I often neglect them as life gets so busy. This week I have a little time so I can join in the week’s topic. I’m supposed to be writing a list of “10 things most people don’t know about me” but I thought I’d mix it up a little and do 10 things about Eliza instead. Here they are, in no particular order…..

1. I LOVE READING…. Sadly some people assume that because I am autistic, I can’t do certain things and are often surprised when they see me reading. I read anything and I mean anything, I have read Mum’s bank statements, comic books and even a children’s Bible. My favourite books are ‘Captain Underpants’ and ‘Horrid Henry’.  I am 9 years old now and last year School told my Mummy that my reading level is around age 11 years.

2. I HAVE AN AMAZING BOND WITH MY BROTHER…. Noah is 4 and we have a lovely relationship. We are very close and we also fall out all the time like siblings often do. We love playing in the paddling pool and having water fights. I like reading stories to Noah and he likes helping me to put my shoes on which I find hard sometimes as my fine motor skills are poor. Even if we fall out, we always make up and have a hug.

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Eliza & Noah, early 2018 and looking like they are mid way through a song!

3. I LOVE UNICORNS AND MERMAIDS…. Although when I once forgot the word unicorn and I called it a ‘horny horse’ it made Mummy laugh for ages! My sensory needs mean I prefer certain clothing like loose T-Shirts, soft leggings etc. Because of the way I dress people often think I am a quite a tomboy. I am to a certain degree but I’m also quite a girly girl. My room has sequin cushions, pink walls, unicorn pictures and lots of cuddly toys but it also has my Wii U with games like Lego Batman, Minecraft, Super Mario Maker. I’m just me and this is the stuff I like.

4. I AM QUITE GOOD AT SPORTS…. I am rather good at basketball and score many hoops. I can run pretty well and fast and last year took place in the relay race at School.  Mummy laughs when she tells me about my first sports day when I was 3 years old. The gun went off and I ran in the opposite direction to everyone else, followed by a couple of teachers in hot pursuit. Recently I tried football (soccer in USA) but I wasn’t too keen. I found I enjoy cricket and was asked to join the Table Cricket Team at School. This week I took part in a Table Cricket Final on behalf of my School and we came second.

5. I DON’T LET EVERYONE IN TO MY WORLD….. I just can’t, it’s too much. I love people but I find it hard to connect with people sometimes. I’m not being rude, it’s just that I lack confidence or struggle to find stuff to talk about. Anxiety plays a huge part in this but if people are patient and meet me at my level as such, it can be pretty awesome. My School report last year stated how much my classmates looked up to me and some saw me as a role model.  I really like having friends and I have some special people in my life. Most of my friends are autistic children or adults. I seem to find myself more comfortable with others that are like me regardless of where they ‘sit’ on the Spectrum.

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This is Chris from the Facebook page and Website named ‘Autistic Not Weird’. He is autistic also and when we are not having lightsaber fights or eating spicy chips, it seems we swap heads like in this photo…..

6. I WEAR EAR DEFENDERS TO BED…. I find it really hard to switch off at night and I have such amazing hearing that I need them to help me close off my mind and settle for sleep. They are nice padded ones so they don’t hurt my ears. They really help me though. Sometimes I need reminding that they can make me forget how loud I am talking because I can’t hear my own voice properly when they are on my ears…. or so Mummy tells me at 3am when I wake her and I’m ‘talking’ to her about Christmas Songs I love!

7. I LOVE FRUIT… Strawberries, bananas and blueberries are my favourite. Sometimes Mummy has to hide the fruit so I don’t eat too much and get a sore tummy. Strawberries taste even better under a mountain of squirty cream….. just saying.

8. I HAVE A HUGE FAMILY….. I already mentioned Noah. I really love my Mummy and Daddy. I have 2 sets of grandparents and lots of Uncles and Aunties, cousins….  I come from a very large family. Mummy is one of seven children and Daddy is one of four. I’m not sure I could count every family member, there are so many. Sometimes we talk to my Uncle and Aunty in Australia via the laptop. They send me things with my name on like cushion covers or door plaques because my name is quite popular there.

9. I KNOW STUFF ABOUT HARRY POTTER… My mummy talks about it so much that when my speech started to come back when I was 4, I was saying the alphabet one day like ‘A is for Apple, B is for Ball….’ and when I got to Q I announced that Q is for Quidditch! Mummy had to pull the car over and wipe a tear of pride from her eye. Some of her favourite shops sell lots of Harry Potter themed clothing so……..

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#QuidditchMuggleFromAzkaban

10. I LOVE GOING TO THE CINEMA AND THEATRE…. It’s taken me a long time to gain control over my anxiety. It’s taken a lot of love, patience, support and understanding from everyone around me. I am grateful I was never overly forced to do things, I was nudged gently and supported to try things when I was ready. Because of this my confidence grew and I learnt to take control of some feelings that were holding me back. Last year I went to the theatre for the first time in years and loved it. I’ve been a couple of times since. On New Years Day I announced out of the blue that I wanted to go to the cinema to see Lego Ninjago…. I’d not been in a cinema for over 4 years so Mummy took me and I loved it. I learnt that I can do these things and they are not scary. Mummy learnt something too…. never to ask me “Do you want anything” because suddenly she found herself carrying pringles crisps, haribo sweets, a rainbow mixed slushie and a hot dog as my film snacks!!

 

Thank You for reading. I’ve written this as if Eliza was writing it. She has sat here with me and I read it out to her and she’s laughed at some stuff and told me to add certain bits so she’s been involved well.

This was a listicle prompt from ‘Finish the sentence Friday’ group hosted by the fabulous Finding Ninee and Sporadically Yours

For the Love of Horses

When I left School many years ago, the only thing I had an interest in was horses. So I went to college and got some qualifications and even competed in some small show jumping and cross-country events. At the stables I worked at, we ran summer clubs and gymkhana’s. My days there were some of the happiest of my life. Except the falling off horses, being kicked by horses, being trodden on by horses and horse flies…. Other than that, pretty awesome days. As much as I loved all the horses in my care, two stole my heart. Starlight and Sundance, although we had nicknames for them. I still have a drawing of them both that was given to me as a gift for my birthday when I worked at the stables (I think it was for my 18th birthday).

Here, have some pictures of me between the ages of 17-20 ish years old with both of them.

Horses

Sundance, also known as ‘Fatty’ because he never stopped eating, was bay colour and a gentle yet stubborn git! If you wanted to head to the right, it was a given that he wanted to go left…. towards the lovely grass he had his eyes on. Always getting holes in his rugs, I spent many a night at home hand stitching his rugs. He was popular with everyone, his name often requested for hacks out because he was pretty safe with all scenarios regarding traffic etc. He was the cute boy that you just had to love.

Starlight, also known as ‘Scar’ or ‘Scar bag’ because of the scars on her face but she was so beautiful. She was a chestnut mare with a serious temper. Nobody was allowed near her tail, she was a kicker. She once let me plait the top of her tail for a competition but made it clear when she’d had enough by trying to eat my face. At competitions she had to wear a red ribbon in her tail which basically alerted others to the dangers of her flying back feet. She was a bitey, kicky, feisty, moody, stubborn, aggressive mare… and I loved her dearly. Point her at a show jumping fence and she was happy. We won a fair few rosettes for clear rounds between us. I have fond memories of us jumping, hacking out (although freaking at the sight of a tractor and trying to chuck me in a ditch was not as pleasant memory wise) and I loved just watching her grumpy attitude as she strutted across the field. One day I went to work and she’d gone. The vet had been called and she was ‘put to sleep’ because of twisted gut and she was suffering. I cried for days. I miss her every day, even now.

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Eliza will be 9 soon and has struggled with anxiety a fair few years now. We use essential oils which help loads. We have various strategies that we use if we see her anxiety rising. These days she is pretty good at saying how she feels so she can sometimes give a heads up that anxiety has popped by. One of the best things she ever did was attend ‘Horse Therapy’ (or Equine Therapy). At the start she hated it, well hated the thought of it (anxiety) and would scream as soon as she saw the turning to the stables (anxiety) and we’d spend the first 20-30 minutes of the session in the car for safety whilst she screamed, kicked the car seat and yelled (yep, anxiety). Eventually she would get out and tell me she’s only staying for five minutes. I agreed as it was confidence for her and her compromise. Every time those five minutes ended up as at least an hour if not longer. She’d help groom the ponies, feed them and learn about how to look after them. The minute she sat on a pony to ride she was totally relaxed and anxiety gone. Horses are said to be amazing help for those with autism and special needs and it certainly worked for Eliza. We went for weekly sessions for a year unless the weather was too bad. It gave her confidence, pushed her boundaries, improved her speech along with the confidence and lowering anxiety. She also made friends there. After a year, she didn’t want to go anymore and to be fair I think she’d got what she needed from it. The amazing power of horses.

(I’ll just add here that even though Eliza’s anxiety caused some upset as described above, I know her extremely well and I trusted my instinct and her fighting spirit that she could do it and it was worth persevering. Eliza often needs ‘anxiety squashing time’ and she actually really enjoyed the horses company and she still talks fondly of them now. If at any time it seemed damaging to her, I would have stopped the class).

Here she is (2015-2016)

Eliza Horses

This has been a post for ‘Photo Share Friday’ (although mine turned out to be an essay too lol). Hosted this week by Sporadically Yours and Finding Ninee