I received a email on new year’s eve while I was with family and friends camping. It was one of those moments where I thought to myself, maybe I am doing something right with this blog. It made one person feel like they were not alone. That the positive vibes helped them and to keep going. Which in turn, helps me keep going. I asked if I could share her story and letter she sent to me and to my joy she agreed.
I am forever grateful for the opportunity to meet and talk with other parents and hear their stories, feelings and hopes. It’s incredible.
Our ASD journey started officially in August 2015, my eldest, Zane was 3 years 4 months when he was formally diagnosed.
It was the worst time of our lives, when he was diagnosed. At that time Zane was hospitalised with pneumonia for 5 days. The entire hospital stay was a nightmare experience – Zane had the RS virus, which caused the pneumonia, which meant my husband, our 7 month old too and I caught it too.
In February of that year we had started the process of having Zane diagnosed with a specialist paediatrician. During our first visit with this doctor, he said he couldn’t tell if Zane was on the Spectrum – he said he was sitting on the fence.
I guess Zane had some typical ASD behaviours – lining up cars, sound sensitivity and very limited language.
So this doctor needed to see and know more, he suggested a daycare visit in the upcoming months (and for us and daycare to complete those behavioural questionnaires).
Back to the hospital stay… I just remember I had to tell all the doctors and nurses that we believed Zane was on the Spectrum. It was like I had to explain his extreme behaviour… I was embarrassed at times. He refused, no more like fought every medicine, every examination! I had to hold him down so the nurse could give him Nurofen!
It was heartbreaking, the poor bub, he was so deflated and angry. He didn’t understand why he was there and it was like torture for him being put in a hospital bed that he couldn’t move from.
But that day, it was the worst day of my life. I remember precisely what I was doing when I saw that email from our paediatrician. Yes we got the diagnosis in an email (I found that an odd practice!)
My husband was at hospital with Zane and I was at home with my youngest. I read the email and it brought my world crashing down.
The news wasn’t a surprise, I knew it was coming but I think it’s the finality of having a formal diagnosis. You can’t secretly hope or mentally argue with yourself that he was just fine! Or maybe just reading those words about your son takes away the future you were hoping for.
Anyway as I said I have known something wasn’t quite right with Zane since he was about 18 months.
My first shake up came from Gymbaroo classes. Zane hated being there; he was the only kid crying each week wanting to leave especially when it was group time. He didn’t want to leave the equipment, and join the group; he didn’t know why I would force him to join.
I tried to ignore it, people told me the usual nonsense – “he is boy”, “boys are slower to talk”, “he just likes his space”, “he prefers a quieter setting” etc.
So I did just that, I ignored it!
I cancelled an appointment I had with a paediatrician. I pushed it all away thinking he will soon talk, he will change. But he didn’t talk soon enough; he became more distant with other people and more resistant to things.
So we finally made another appointment with the paediatrician. Zane had also just started daycare for the first time… and I think that’s when you realise he is just not slow to talk, something isn’t right. You can’t ignore this.
So right away, we started speech therapy and then after a few months – started occupational therapy.
In the first 6 months of therapy, I saw some changes and improvement with Zane. But mentally I was still struggling… I couldn’t let go of the life I wanted or thought I would have.
I saw that it was affecting me as a mother. Being at home (on maternity leave) with my second boy and I could feel myself becoming resentful and angry.
I realised that I couldn’t keep going like this. So I found a therapist named Jo – she specialised in counselling families with children on the Spectrum!
During our first appointment, she gave me a homework exercise to write down all the guilt I was feeling (I was blaming myself for Zane’s autism) and then to later write down the positive side from that.
I don’t know what it was, but I wrote down this one statement (in the positive) that made me release all (ok not all but most!) of my anger.
I wrote down: Autism is not the end of the life!
I can’t explain exactly why but that statement just changed me. I probably thought that autism meant the end of a happy life, dreams for your child. Jo also got me to read “Welcome to Holland” (http://www.our-kids.org/Archives/Holland.html)
I think that helped also to reconfirm that thought that autism isn’t the end of life, it is just going to be a different life.
A year and a half later since the diagnosis, I am now seeing things so differently.
Autism isn’t a negative any more. It is a gift, it is part of Zane and what makes him an amazing child. He is loving, funny, and quirky!
Thanks to early intervention – a fabulous speech therapist and an amazing OT – Zane has come such a long way. He now uses 3-4 words in a sentence. He is imitating play, and interested in different things, and responds to his name! And the love he shows his little brother, ahh it makes your heart melt.
My husband and I try to understand before we react and understand his sensory needs. We read, we discuss and we keep learning more and more about Zane, and about autism.
Like you, I love my life. We have challenging days like all parents do.
But I won’t now say my life is harder than others. We all have our own challenges and issues. But it truly is your attitude that makes life hard or easy!
Keep writing your blog, I love your attitude! The ASD community does need more positive experiences.
You have the art of writing and your experiences are so close to my heart!
So thank you for taking the time out of your life to share like that.
So Anjana got me thinking.
I used strive too be different , totally unique, this creative elevated status.
Now there is nothing wrong at all with being different….hell I’m an ASD parent so I know all about different.
But it was a different kind. A show. And I know it came from my back ground in the arts. You are pushed to be different, think different, look a certain way and a must must must is tell your story in a different way.
So much so it can pretty much become soul destroying on this ridiculous quest of uniqueness. Just to story tell. Just to communicate
It’s as I have gotten older that your realise more and more that, that quest and just being your authentic self are two completely different things. And the thing that can bring us together IS in fact finding the similarities in your story.
A feeling that you are not alone.
So far I have not come across one story that has been shared with me that doesn’t have overwhelming similarities.
It is not said in a dramatic and theatrical way. It’s not sprinkled with sub plot’s and twists.
It is just said in the simplicity of the story tellers own words. And that connects us all. That is all that is needed. And that is enough.
Thank you so much beautiful Anjana….you are amazing!