28 March 2017

Autism Awareness - #YourJourneyMyBlog - The Long, Bumpy Road to an Autism Diagnosis

The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, they plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.

So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you.

Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for. 

Autism - the start of a very long and bumpy road.

It's a girl! 

It was amazing to hear those words from the sonographer at our 20 week scan. Fast forward 20 weeks and after a long labour, Chyler was born under emergency circumstances. She pulled through and after almost a week in hospital, we got to take our precious bundle home. She was always a placid, laid back baby - or so we thought. 

At 18 months we were pulled into Nursery and advised Chyler wasn't "walking and talking" the way she should be. I put it down to her going at her own speed but agreed to Speech and Language Therapy (SALT) sessions for her. After all if she could benefit why not? Little did I know that was just the start of a very long and bumpy road! The sessions made no difference and a referral was made to the local Paediatricians to make sure there were no on going medical issues. 

Fast forward 18 months and after 9 months of observations and appointments, Chylers' ADOS came back - Autistic. At 3 years and 4 months old. Our world felt like it came crashing down. Not because of the diagnosis but because as her mother I felt like I failed her. I didn't and I know that now - but hormones are a wonderful thing! This was just the tip of the iceberg for us as a family as we would later come to realise.  

Chyler is quirky, funny and has the most amazing smile. 

She can light up a room with it and her infectious laugh. She likes routine which was a very strict one at that (and don't we know it if it's broken or not adhered to) and she will hit fight or flight mode at the first chance if given it. We struggle with weekly tasks like shopping etc because of the noise and crowds and going out to celebrations and days out have to be planned with military precision and even then there is no guarantee she will play ball and it will go to plan - if at all!  
Chyler is not only autistic, she also has a long list of other disabilities - which sometimes hinder our progress from an Autism point of view. It's not easy - but no one said life would be and I would be lying if I said I don't become frustrated with ASD sometimes - because ultimately I'm human and have a breaking point too. 

But I have to remain strong for both my girls. 

Chyler has a younger sister, Peighton who at the age of 3, was also diagnosed as ASD. She is the complete opposite side of the spectrum to Chyler, but she has her demons also and massive anxiety issues that don't mixed well with ASD. Dad is also now on the pathway to DX. We've always "joked" about how he has a lot of quirks and autistic traits, but never really done anything about it. However the longer this journey goes on, the more apparent it is that actually he may well be on the spectrum too. 

Every day is different in our house, some are good, others not so much. Now hormones are on the mix too it sometimes becomes too much and we retreat to our "bubble" and block out the world. But as long as they're safe and happy then that's fine with me. Ultimately their happiness and well - being is paramount to us and comes first always. 

It's hard being a parent anyway, but when you have children with additional needs and disabilities - it becomes that little bit harder. We are not perfect by any means but we get by, by taking each day as it comes. Having been on this road for over 8 years now, it's been a long, winding one with a lot of "pot holes" BUT we don't let them beat us. We fix the punctures and move forward. Life is too short to keep looking back after all :) 

Autism doesn't change who my girls are, it helps shape them into who they are. Anyone who has the pleasure of having them in their lives are the lucky ones - not the other way round! 

Sadie xx

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1 comment:

  1. An excellent read. I think it is time that people stopped considering autism as a disease. I remember when my son was diagnosed with autism, I got so much stick for trying to raise a 'defective' kid. His time at school was even worse and it continued until we switched his school to Rebecca, a dedicated special ed school here in New York. Since then, one would find it difficult to differentiate between him and any other 'normal' child.