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.

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

What am I afraid of?

What are you afraid of? Spiders? Mice? Flying?. Everyone has fears don’t they? (even if they don’t admit them or want to talk about them). I’m not a fan of mice or spiders but I can catch and remove them from the house without having a heart attack or passing out. Flying, I’m fine with although the popping of ears really annoys me and I’m not keen on the take off as the plane surges forward. I am afraid of many things, some deep and emotional things and other stuff that is completely stupid and pointless but I feel that way anyway.

Do you have children? I do. Eliza is 9 soon and Noah is 4. I am a single parent (and main carer to Eliza who is autistic with learning difficulties). I bet all parents have the same fear as I do – dying. For me it’s not so much about how I’ll die or when, it’s what I’ll leave behind and that includes those two beautiful little humans that rely on me every day. I’m terrified of dying when they are young. I want to be old and have seen them settle in life with their own families or a job they love. No parent should ever live longer than their child, a thought I can’t bear to ponder on as it just adds to my anxiety about the whole situation. As awful as it is to think about it, I often do. It’s like living in fear yet living with a need to make sure you do as much as possible now for the future. I worry for both of them but with extra worry for Eliza. Nobody knows what the future holds but she’ll ever live a fully independent life, she’s always going to need supervision and support. I worry about how she’d be without me so I spend a lot of time teaching her life skills and talking her through situations and scenarios and I often push her comfort zones. I once saw a picture on another Facebook page and I’ve never forgotten it. It was from a lovely page I follow called Forehead kisses – Our Awesome Autism page and this was the picture..

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I found it so emotional to read. But that’s what we do for our children, teach them how to live independently because one day, we won’t be here for them. So yeah, I fear dying but not for the actual dying part.

**You should check out that beautiful page, it’s been wonderful watching Brodie growing up (who now has left school and has his own business)**

I’m afraid of driving yet I drive most days although mainly short distances. I’ve thrown up on the driveway before at just the thought of getting in the car! My legs shake, I start to cough (you know that kind of annoying anxiety induced back if throat cough) and I have to sometimes talk myself in to driving (I’m actually fine once in the car). I was in the passenger seat of a car once when the driver was going too fast on a country lane, skidded and we ended up in a ditch. I had an accident where I was the driver years ago when heavily pregnant with Eliza. My car was a total write off and the road I was on was dark with nothing in walking distance. It was raining heavily and thundering. I stood in the dark in the rain with my almost 7 month baby bump, waiting to be rescued and not a single driver stopped to help. I’ve also been a passenger that felt nothing but helpless fear when my husband had a massive panic attack in the car and started shaking and shut his eyes whilst he was driving. I had to calm him fast and help him pull in to a lay by. A very small baby Eliza was fast asleep in the back of the car. I then had to drive us home, my first time ever on a motorway and only 7 months after my own accident. I HATE DRIVING!!! But I need to. The kids have appointments, Eliza’s school in 35 mins away, shopping etc. I also do it because I don’t want to let fear and anxiety win. So I push my own comfort zones.

I’m scared of sharks! Like forgetting I can breathe, sweaty palms, legs buckling under me scared. Doesn’t matter which type, they are all scary! Yes, go ahead and laugh. It’s a totally ridiculous fear to have. I live in the UK, pretty central/midlands area with absolutely NO possibility of meeting a shark unless I visit the sea-life centers. But nonetheless, they terrify me. I’ve been in the sea-life places before and walked through those glass tunnels where sharks lay over the top or swim by. A giggling and happy Eliza or Noah have a blast. They look in amazement at these things. Me…. eyes straight ahead at the exit and do not engage eye contact with the sharks, I repeat do not engage eye contact with the sharks…… FEAR!! The stupidest fear I have but it’s there. I only agreed to go swimming in the ocean in Australia after I asked my brother about 30,000 times if he was pretty sure I’d not meet any sharks (and that if I did, he’d wrestle them until they spat me out if they ate me). I’ve had many nightmares involving sharks attacking me, eating me, swimming around me in circles and even being trapped in a cage with a shark…… STUPID FEAR!!

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**Avoids eye contact with shark picture**

Other than totally waffling my way through this blog, I find it interesting that the three things I chose to share are so different and have come about because of life and situations (other than the sharks, NO IDEA where that came from). That emotional deep-rooted fear about dying too soon, the circumstance induced fear because of cars and accidents and the just stupid irrational ‘did God throw that in for a laugh’ fear.

This has been a Finish the Sentence Friday post. This week’s topic is “I’m afraid of/that…” hosted by Finding Ninee by Kristi Rieger Campbell and Sporadically Yours

 

 

Favourite Things (of Eliza)

This is a Listicle Friday post from the ‘Finish the sentence Friday’ group I am in although I’m finally adding my efforts on Sunday because, well life is busy as usual. This week we have to list ten of our favourite things so I thought I’d ask Eliza what her ten favourite things are and write about those. Some of her answers really made me laugh.

Pasta – Yep, seriously! One of her favourite things in life is pasta. She’d eat it every day if she could and it has to be plain with no toppings or only grated cheese. No other ways will do. Since asking her about her favourite things and her saying pasta, she’s now asking for pasta so I guess I know what I’m cooking tonight.

iPad – No surprise there. She loves her iPad and her precious Roblox game. Not so long ago the iPad was her means to helping her communicate with ‘talking software’ similar to PECS (Picture Exchange Communication System). Nowadays it’s all about the games. And the music. Eliza recently found a love for pop music after years of Disney tracks so she also has her iTunes play list on there which includes Taylor Swift, Queen and Ed Sheeran.

Her new knickers! – Oh how I laughed. But yes, her new knickers are amazing she says. She likes the boy shorts style ones and recently I got her some that have the word ‘whatever’ repeatedly printed around the waistband. She thought that was hilarious and now they are her favourite pants lol. Whenever she wears them she says ‘whatever’ in a kind of 8 year olds attempt at an attitude tone.

Super Mario – Especially playing Mario Kart 8 and Super Mario Maker. She has cuddly toys from the games, a racing track, a hoodie, socks… Eliza just loves Mario and has the games on her Wii-U and DS consoles.

Jaffa Cakes – On the off chance you’ve never heard of them, they are chocolate sponge like biscuits with an orange squishy centre. She loves them and would eat them all if she got her hands on them. Here, have a picture.. United biscuits sale

Adventure Time – An animated TV show that I just don’t get but she does and it’s one of her most watched things. “Twelve-year-old Finn battles evil in the Land of Ooo. Assisted by his magical dog, Jake, Finn roams the Land of Ooo righting wrongs and battling evil. Usually that evil comes in the form of the Ice King, who is in search of a wife. He’s decided he should wed Princess Bubblegum, though she doesn’t want to marry him. Still, he persists in trying to steal her away, and Finn and Jake, along with Lady Raincorn (a cross between a unicorn and a rainbow) do their best to keep her from harm”. To me it’s just background noise but she loves it and can talk about it at great length when she wants to. 

Special Days – OK this one melted my heart a lot. As much as we enjoy family time together I always do separate things with each of the kids (because they are in to different things, different ages and I think it’s nice to have quality time with each). I recently took Eliza to the theatre for a relaxed performance of ‘The Wind in the Willows’ and she loved it. Sat for the whole thing, laughed and clapped. It’s been something we’ve worked towards for a long time as anxiety often stops her enjoying things. On New Years Eve morning she decided she’d like to go to the cinema to watch ‘Lego Ninjago’. She’d not been to the cinema for years (anxiety) but with her new found enjoyment at watching Lego related animated shows on TV, she wanted to go. So we did. She sat through the entire thing equipped with sweets and a drink. She really enjoyed it and has asked to go to the cinema again so I keep telling her what is on, so when she likes something we can go. ooi98u8

Trumping – No, it’s nothing to do with Donald!!. Eliza is giggling away after saying this. Politely it means breaking/passing wind but she thinks this is a hilarious answer so here it is. #ShesStillLaughing   #TheThingsSheFindsFunny

Paddling Pools – Nothing she likes more in summer than a splash in the pool and a water fight. On hot summer days here I often see what has become known as the ‘school to pool’ transition. Basically there is a straight line from our front door to the back door. Eliza gets off the school bus and walks in, I tell her the pool is filled. In the few seconds it takes for me to close and lock the door and put her coat away she has already stripped completely and looking for her swim suit, leaving a trail of school uniform behind in the hallway. Yep, ‘School to pool’ lol

The House – She loves the house we live in and the surrounding area. We live close to forests to often see deer, foxes, hedgehogs, red kites and many more. We have a park we can walk to in five minutes and a lot of open green areas. Eliza loves her bedroom, it’s her fun and safe place to be. Our local area do carol singing at Christmas, Halloween trick or treat locally, Summer fun days etc. It’s very family orientated and very inclusive. I think the move here was the best thing for her and her brother.

So there you go, Eliza’s current most favourite things. She’s a funny character and there is never a boring day here at home. This, as I said above, was part of ‘Finish the sentence Friday’ and the new listicle thingymebob. This week hosted by Finding Ninee and Sporadically Yours

 

 

 

 

Our December

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December is here. The countdown to Christmas has begun as advent calendars and candles start, countless elf on the shelf pictures appear daily on social media and generally the shops in town suddenly get busier each day on the run up to Christmas Eve. Of course, Christmas songs started on the radio as soon as Bonfire night was over! Our house is decorated, minus the tree that we collect in a weeks time. Both of my children love Christmas but especially Eliza. It’s her favourite time of year. She loves the lights, the tree, her letter from Santa, Christmas films, driving past all the houses lit up at night… Her love of Christmas and Santa helped Eliza on her journey to becoming continent too, with a little help from Mrs. Claus as well (Striving for Continence) . This year I’ve added something new. We have an elf, although he’s not on the shelf. I’m not doing it for monitoring or encouraging behaviours, the elf is not reporting back to Santa etc. I’m doing it because I think the kids will find it funny and have a giggle. You see, our elf is a very cheeky elf and he’s going to get up to some light mischief on the run up to Christmas, simply to entertain the children. That’s the way we’re doing it anyway.

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All presents are already purchased and hidden in the house ready for wrapping.  I’m an early shopper, once September school term starts is when I start picking up a gift here and there. I find it very hard to buy for Eliza every year. She has her safety net of favourite things that never change (Super Mario, any gadgets, Mickey Mouse, Sonic and Dr Seuss) which is a blessing for me as I can always find something she’d like. Other than those few things, her tastes change often. This year has been a little different. She had some ideas of her own and told me. The last few months she’s grown up so much in what she likes and how she behaves. Eliza would like an MP3 player because “I wants pop songs on it, big headphones and I can take it in the car”. She’s recently changed from listening to Disney Soundtracks to asking for pop music. Taylor Swift’s ‘Shake it off’ has her up and dancing before you can blink. She’d also like a bag and a purse so she can carry her fidget stuff around and her pocket money. My baby is growing up yet I can still see her in her red dress for her first Christmas, wide-eyed at the sight of Santa arriving at play group and then attempting to open her gift by eating the paper. In fact, I found that exact photo…

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Every year we visit Santa and this year is no different. I have a feeling we will be visiting Santa for a fair few many years yet. Eliza totally believes still, it’s more likely her younger brother will find out the truth sooner than her, at 3 years old he already noticed how Santa looks different on all the TV adverts! So yeah, we visit Santa every single December and she loves it. She ups her stimming in December, ‘the Santa effect’ I call it. She flaps and jumps so much with excitement I seriously think she stands a chance at flying one day. Her innocence is just so beautiful. As soon as she sets eyes on Santa though, her words disappear in a ‘star struck’ kind of way. Last year when she saw him she whispered quietly “He’s really here” and couldn’t stop smiling.

We try to take part in the local festivities too, the Carol Singing and lighting up the tree. I’ll be attending Eliza’s School for a few Christmas themed things and Noah has a Christmas party at nursery to enjoy. I’m taking Eliza to the theatre in a few weeks to see ‘Wind in the Willows’ followed by lunch in McDonald’s and buying some sweets from the shop before going home. That is our mum and daughter afternoon out (Noah and I go to kids farm and play place together one day when she is at School, that’s our afternoon out). We’ll have a drive around the local area now and again in the evenings to check out the lights on people’s houses.  So for us, December is pretty amazing. Sadly not everyone enjoys Christmas and the run up to it. It can be really distressing for many children and adults as everywhere suddenly looks, smells, feels, and sounds different. The routine is completely thrown out so just please be aware that not everyone will find it easy at this time of year.

Thanks for reading. This blog was part of a ‘Finish the sentence Friday’ and the topic is the holidays and the approach to them. Hosted by my wonderful friend over at Finding Ninee

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The Most Hurtful Words I Remember

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People often say stupid things. We all do it at some point and thankfully others do understand. We make mistakes, we’re human. However there are times that I wished people had put more serious thought in to what they said or even stopped themselves from opening their mouths in the first place. Words can be inspiring, educational, uplifting and life changing. They can also be devastating and hurtful. Most of us will have been hurt by things others have said even if they never meant them to. I sat here thinking about the things that have been said to us in the past and there are three memories that stick, for the wrong reasons. Three different times I’ve been left speechless or angry. So here they are…

  1. “Don’t expect much from her, she’ll never read or write and I doubt she’ll ever speak” were the parting words to us as we left the office of a pediatrician that saw Eliza when she was just 2 years old. He refused to diagnose her because she was “Too young to be autistic….” **Insert eye roll here** but he happily wrote her off. How?? I’m pretty sure he didn’t have a crystal ball to see the future or a time machine to back up his awful comments. He simply decided she was nothing and would become nothing. What did we do? We changed pediatrician! One that allowed her grow and develop and believed in her and encouraged her. Eliza proves the first one wrong every single day. Her speech returned, she can write although her fine motor skills will always need working on and she’s very much aware that it’s a weaker point for her (She has a lot of anxiety at the thought of even holding a pen but she still tries, never gives up). As for never reading, she is 8 years old now and school recently informed me Eliza reads age 10-11 year level.
  2. “Are you not scared there will be something wrong with that one too?” was said to me whilst pointing at my baby bump 4 years ago (that is now Noah, Eliza’s younger brother). Let me tell you that there is nothing ‘wrong’ with Eliza. She’s not broken, she’s different. She is beautiful, feisty, intelligent, funny and caring. She is autistic. She is not to be feared (unless the Wi-Fi drops and then it’s every man, woman and child for themselves…..). It amazes me even now how many people fear autism and their eyes fill with pity as they open their mouths to say something most likely along the lines of ‘Oh, I’m so sorry…..’ and it’s just another reason why it’s important to raise autism acceptance and understanding.
  3. “Why don’t you adopt her out so you can get on with your life. You’re young enough to have another one and they might not turn out like her” is THE MOST HURTFUL THING I’LL EVER REMEMBER TILL THE DAY I DIE!!! A friend said that to me. A FRIEND! (Who I have never seen nor spoken to since that day). All because I had said we were having appointments with a pediatrician to determine if Eliza would be assessed for autism or not. She wasn’t even diagnosed yet someone I trusted and cared about thought it appropriate to tell me to give her away. Not only that, to replace her as if she were nothing! I still struggle with processing this memory even now. Back then, I said nothing. I walked away in shock and cried at home. These days I’d probably be arrested for causing a scene as I’d be up there on my soap box educating people loudly and firmly!

So there they are. The three moments that played a huge part in shaping me for the person I am today and in a knock on effect, shape the amazing and beautiful girl that’s currently stimming next to me and laughing at ‘Tom & Jerry’ on TV whilst also scripting from ‘Wreck it Ralph’. For a long time I hid away from friendships and socialising with people because in my head if friends could say such awful things, imagine what enemies could say!!! Thankfully now we’ve surrounded ourselves with an amazing bunch of people, some have become great personal friends. Eliza is thriving and loves life, she has friends and is doing really well at school. She didn’t deserve to be written off and how wrong they were to do so.

 

 

The People You Meet…

lihobko

I’ve been alive for 40 years now so it is safe to say I have met a fair few people over the years. It is interesting how the people we meet change our lives and sadly some not always for the better but we learn from the mistakes, the pain and the negativity and we move on. I come from a large yet scattered and disconnected family although I am lucky to have a few amazing members of the family who have been, and always will be, there no matter what. Some do their best to understand about Eliza and autism. I have a select few close friends that know everything about me and my life. I have quite a few what I call ‘passing friends’ that I may not see often, may not chat to often but they are friends. It’s just that lives are so busy and sometimes so very different that we don’t get the chance to be more than friends that simply pass each other here and there. Then there is this extra family that I have. A family I found over the last few years and it keeps growing. This family is also made up of wonderful people. Some I have never met and some I may never get to meet, a few I plan to meet and a few I have had the delightful privilege of meeting already. I met them all through my blog and through my Facebook page Living With Blooming Autism

When you start to tell people your child is different, it can be a real make or break time between yourself and family & friends. Within months of telling people Eliza is autistic, our friendship circle didn’t just reduce, it pretty much disappeared. I was no longer welcome at coffee morning/play date sessions, Eliza was no longer invited to birthday parties. She was different and to some, she simply didn’t fit in with plans or ideas of how a child should be. Judgemental? Yes. Lack of understanding? Totally. The day a ‘friend’ told me to adopt Eliza to someone else so I could get on with my life was a moment that changed me and still gets to me even today. At 40 years of age I panic at the offer of friendship. That fear of being tossed aside and pretty much abandoned (at a time I really needed people the most) is always there in my head. The pain I felt in my heart that my beautiful daughter was not wanted by others because she didn’t fit their perfect ideas and lifestyles is always there in my head. Luckily I have been honest and open to the lovely friends that I have and they understand why I sometimes take a while to put myself (and Eliza) back out there for things. It’s not easy to regain confidence after something like that which was caused by something you and your daughter have no control over.

A couple of years ago I started our Facebook Page. It was an outlet for me, a way to spread awareness and understanding about autism but also a place to share stories about Eliza and how she progresses. Through that page and then this blog I have met some amazing people. Some are becoming very close friends and quite a few I chat to on a daily basis or regularly. A few have even met myself and Eliza. Some are fellow page owners/bloggers, some are parents/carers, some are teachers, some are autistic adults. Quite a few are a combination of those groups. All different backgrounds, some different Countries and various ages. A bunch of amazing people. They all just ‘get it’ when I rant about stuff or celebrate something that might seem so small to others but these guys know how important it is. We learn from each other because every single life story behind each of us is so different. We share our celebratory moments with each other and sometimes our darkest ones. We pick each other up on the days we feel like giving up, we celebrate the successes of each other no matter how big or how small. We fight sometimes, we bicker (let’s face it life is extremely hard some days and we are all exhausted) but we make up and we move on without grudges. That is why I call them my extra family. I need them. I like having them in my life. I love that they want us in theirs. Some of them I may have not met face to face yet, some I may never meet in person but they are part of my life through meeting online and making our own support network.

I love my family, my friends and I also love my extra family. Because of all the people I have met along the way, these are the ones that matter the most. These are the ones that are making me, me! The ones that accept and love us no matter what and continually offer support and understanding. Those of you that chose to walk away I thank you, because you helped make me the person I am today. Such a shame you won’t get to see the amazing person my daughter is. You chose ignorance over understanding and acceptance. Some of you just didn’t understand but rather than ask you moved on. You are missing out on so much. I will be fine. Eliza will be amazing. Because we have the people that matter.

This piece was written for  ‘Finish the Sentence Friday’ which is hosted this week by Finding Ninee and mardrasikora