World Autism Day – 2nd April 2020

Happy World Autism Day. A day so very close to my heart. I was once like many. I was scared of autism. I was scared of potentially one day having a child with autism. I hoped and prayed that when we eventually had kids, that none of them would have autism. Oh how naive I was.

Autism isn’t something to be scared of. It isn’t something to worry about if your child has it. Autism can be a beautiful gift. A blessing.

I remember looking at my beautiful baby boy who, at 6 weeks old, still wouldn’t hold eye contact with me like other babies would with their parents. I remember the flapping hands as he would lie on his back looking at the world around him – this is called stimming. My teeny, tiny, little baby. I saw the red flags early. I documented anything I saw. And slowly, we had a 3 page list of autism traits by the time he was a year and a half. (It’s important to note that almost everyone has some traits that are ASD traits, this doesn’t equate to being on the spectrum.)

I had worked on eye contact with him from the very beginning. When he would enter a doctors appointment he would look at the doctor as I had taught him to do with people. But it was never quality. Eye contact does not equal quality. Doctors would comment about how he couldn’t be on the spectrum because he’s got eye contact. Oh if only they knew more.

I’ve always had such a keen interest and passion for children and adults with disabilities and special/additional needs. I’ve had many interactions with children who have Autism. And I’ve loved each of them dearly. Their love of life and uniqueness is something to love and embrace. Not to be scared of.

We went on the long waitlist for my boy to be officially assessed for autism. That list was a long wait. A year! In the meantime I took him to be tested privately (they can’t give an official diagnosis or a level number) and it turned out he was very highly likely on the spectrum. No surprise.

We did lots of work with him, he saw community speech, but we were already doing everything she suggested (bonus in having an early childhood degree – we did a lot of study into children with additional needs). We finally got some OT for him (massive waitlists there too) and psychology too (even longer waitlist).

The week before I was due to have the twins, it was finally his official assessment time at the hospital. I got us ready early because I know anything can set him off and then getting in the car can turn into what feels like world war three, well almost. And unfortunately on this morning that is exactly what happened. I gave us an hour and a half extra in case this happened. And it did. It took that long for him to get into his car seat and be clipped up. It wasn’t a tantrum. It was a meltdown. It was a change in his regular routine. And for the first time ever with his meltdowns, I ended up bawling my eyes out.

We were, in the end, half an hour late to his appointment. Not because we weren’t ready in time (we were set to be there an hour and a half early as I said before) but because we couldn’t leave to get there.

That assessment took about 4 hours to complete. It involved extensive reports from other health professionals who had been working with him, multiple assessments done there at the hospital by the paediatrician, the OT, the Speechie, the psychologist and the social worker. It was all filmed too, and students on their Prac placement at the hospital were watching from behind a screen so they could learn. And multiple questions to me. It was long. Draining. Hard. But so worth it.

I guess I went there knowing the answer but hoping I was going to get a different one. I don’t know why. I guess life is hard enough without having additional needs.

The team had their discussions away from us after all of the assessments and when they returned, we were still in the assessment room. We had been allowed to go away for a bit, but my boy wouldn’t leave the safety of the room that he was now comfortable in.

The team delivered the news. Yes, our concerns were grounded in reality. Our little boy, almost 3 years old (at the time) is on the spectrum. Level 2 Autism. That is quite a significant diagnosis/level requiring significant intervention for him. Lifelong.

My head began to spin in a wilderness of relief and realisation. Relief that finally my boy can gain access to regular early intervention which he so desperately needed (he was still mostly non-verbal at this stage). And the realisation that this is him. The rest of his life he will be finding ways to fit in and blend in, in a world that is scared of people with autism. In a world where people would rather not vaccinate their child, potentially allowing a disease to KILL their child, *in case* vaccines cause autism (I firmly believe that vaccines DO NOT cause autism – I saw these red flags BEFORE his vaccinations began). [side note – please do not turn this into a vaccine debate.] I realised my boy might be treated differently. That people may not give him the time and love that he needs because he is different to other children. He had already been through so much with his spina bifida and spinal surgery when he was just one year old. Now this.

But you know what? He’s now almost a year post official diagnosis and he’s THRIVING!!! He does need to be taught many social things explicitly and reinforced a lot. Life is a constant juggling act to try to avoid most triggers while allowing him to have some so that he can learn coping strategies with us supporting him as he does this.

And he has taught me so much. Autism is not something to fear. It is beautiful. The way he sees the world is refreshing. The way he problem solves things is amazing. I’m learning all of the time from my miracle little boy. He gives me so many laughs. He is absolutely hilarious. Such a character and everywhere he goes, he turns heads. He is perfect as he is.

Yes autism, is a neurological condition and therefore is challenging for my boy and for us to navigate the world through his eyes. But I wouldn’t change things. It is what makes him extra special. Extra amazing. Extraordinary!!!

This time last year he wasn’t speaking. He was still signing for communication. Now, he’s come so far. We can actually have conversations with each other. It brings tears to my eyes. I am beyond proud of him and I know he will use his ASD to bring so much awareness, understanding and love for people who have ASD.

Autism is not something to fear. It is not something to worry about. It is a unique way of seeing the world. It is real. Authentic. Beautiful.

I saw an interview today with a boy and his mother. The boy has autism. During the interview the boy yawned as things were getting boring for him. I smiled and let out a big laugh. I love this. I love that people on the spectrum often (not everyone) don’t innately have the social awareness of what would be considered appropriate. I love that they don’t hide behind masks but that they are real, what you see is what you get.

If you ask my boy if he’d like to hug his (mum, dad, grandparent, friend etc) and he doesn’t want to, he replies “no” and carries on doing whatever he’s doing. Love the rawness and truth. He tells you life how he sees it. If he gives you a hug, it’s real. If he tells you he loves you, he means it. And often he finds such unique ways, far beyond his years, of solving a problem or challenge.

So on this World Autism Day, I hope you find so much love for these special, unique and incredible humans who we need so much in our lives. They will be the ones that fill in the gaps that neurotypical people can’t. Atypical neurodiversity needs to be celebrated. Because when you do, you create a world where my beautiful boy will be loved, supported and be able to reach his full potential.

He lights up my life.
Love this kid so much.
He is the best big brother to the twins.

12 thoughts on “World Autism Day – 2nd April 2020

  1. Thank you Jen for such an honest,open, blog. When I worked as a teaching assistant in primary school, I loved the honesty of children with Autism, one day a girl was holding the door open for me and some children to walk through, as I passed she said “Mrs Tarrant you are a very big lady,” I had to agree,[and giggle] as I had put on a lot of weight! You can’t take offense at these children as you said they tell you how it is xx

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    • Awww I had a little giggle there. You’re so right – as children they are so honest with the purest of hearts. Some of my most fondest memories are with children who have asd. 💕

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  2. Jeremiah is so blessed to have you two as parent. So many beautiful children with autism are born to parents who don’t know how to handle them or don’t have the patience to learn. God knew what he was doing when he gave you guys Jeremiah. Such a beautiful boy! So hope we can meet him someday soon. Love you guys xxx

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    • Thank you beautiful Natalie. We are so blessed to have him in our lives. He teaches us so much everyday. And everyday he gives us reasons to celebrate. So much joy with him. Thank you for your lovely words. I hope you get to meet him one day and vice versa xxx

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  3. My fourth son who is four just received an autism diagnosis. I suspected for a time, but wasn’t certain. I was so relieved upon learning only because I finally could understand his nature and traits a bit more. He is almost non verbal though he makes plenty of noise and just beginning potty training. He is the apple of my eye and delight of my life as are all of my 5 sons in different ways. Michael just communicates quite differently and special. Thank you for writing this. It’s the first blog post I have happened across since learning about him. Your child is extraordinary and adorable! I’m delighted to be a Mamma to each of mine and proud of every difference we celebrate.

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    • I want to congratulate you 😉 💕 I think with asd (and anything) it’s all about our perspective. Your boys will all flourish with such a loving mother. Children with additional needs have such a beautiful perfectness about them xxx

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  4. Thank you! There are so many things to celebrate. Sometimes, someday I get a little lost in the amount of effort thats required. I worry and wonder if I’m failing all these little buddies of mine. There’s so much to learn and understand. We are at last getting an IEP in place for my 10 year old asd. I’m praying at last he’ll like school. Always trying my best! Many blessings along this journey to you and your family!

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