Today marks one year since we got Jack’s formal autism diagnosis. Really we’d felt it in our hearts for a long time and not getting the diagnosis would have been more of a shock than the diagnosis itself. We had been there at the assessments, got the feedback, we knew it was coming.
Even when you know it in your heart there’s still something about the formality of a diagnosis that hits you for six. I remember driving home from the appointment quietly sobbing, realising that with no uncertain terms, Jack’s life would always be that little bit harder, and selfishly, that our life would always be that little bit harder, too. Looking back on that day with a future unknown, scarily looming in front, and no guidebook or crystal ball in sight, there’s a few things I’d love to tell my husband and I.
It’s okay to grieve the diagnosis. An autism spectrum disorder (ASD) diagnosis is a life for your child with more challenges, a world that is scary for them, overwhelming, and confusing. You are losing a tiny bit of you, and you are no longer just a parent, but a carer too. Despite the fact that you had been living with autism before it became final, it’s still an adjustment, and it’s okay to take your time adjusting.
When talking about the challenges of being an ASD parent, you don’t need to preface the sentence with ‘I love my child but…’. I would say this so many times on his hardest days, and saying it only made me feel more guilty for having my own battles. Of course I loved him. I’d give my life for him, but that doesn’t mean I didn’t deserve to vent and talk about my own feelings about the situation.
You will need to learn to put yourself first sometimes, and you should find a way to ask for help. I was very sick when Jack’s diagnosis came, and honestly, sometimes going to the hospital for my regular drip was the only chance I got respite, and even then it was at the sacrifice of my husband. I wish I’d known then that it was okay for both of us to ask to be put first, and looking back I wish we’d actually asked for a hand. The problem with never asking for help is that sometimes you never get it. It’s the age old theory that you can’t pour from an empty cup, and you’re going to need a filled cup in your new life.
You will become strong like a lion, and learn to protect your cub like never before. You will fiercely advocate, you will research and find all the best services, and you will roar damn bloody loud when trying to get the best for your kid. You won’t stop until you know they are in the best hands with the best services. It won’t always please everyone, but that’s okay.
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You will learn to trust your instincts; like, really trust them. There will be times when on paper, something might look like the best fit but in real life it isn’t. Trusting that feeling will always get the best for your baby. Your instincts knew something was wrong from the start, and they’ll always be right moving forward.
You will feel isolated. You might not know any other people with kids with ASD, and it will be lonely. It will suck for a little while looking for your place, finding your people, and a year on you are only just starting to find them. While hard, the isolation is in hindsight a helpful thing as you establish who you are, and gather your strength and positivity. It also teaches you to reach out to others in the same boat – to put yourself out there. You learn a new type of kindness from it.
You will surprise yourself. You will surprise yourself with patience, love, and understanding, like you never knew you had. You will surprise yourself with how soft and gentle you can be in a whirlwind, and how much your heart can love someone so much. You will also surprise yourself with how much your bullshit tolerance drops. When you give all your energy to another person like that, you have less energy to deal with silly matters, and it may be one of the best things to come out of it all.
You will learn to stop caring so much about what other people think, but it will take practice. That first meltdown at kinder with everyone watching you will feel like crawling into a hole. Soon, you will stop seeing anyone else, and be able to focus entirely on your child. You will learn to be in a bubble and protect that bubble.
Sometimes, you will feel really sad watching typically developing kids. You will see your little man with his limited language and struggling social skills, and your heart will ache a bit. It will pass and be overtaken celebrating a new win, but the sadness will happen, and that’s okay.
You will start to understand that living with ASD can’t be explained to everyone, that some people will never understand the life with an ASD child, and you become accepting of that. You can stop fighting, stop begging to be heard, and just get on with it. When you do that you will feel a lot more peaceful.
Sure, there will be hard days, but there will be sky high wins, and those wins will make every ounce of effort feel so amazing. Learning a new word, playing with other kids, doing something for the first time - it’s different to a typically developing child because your child has had to fight so hard for it. But when they get it, it’s a feeling of joy like no other.
You will become a better parent for this, and not just to your kid with ASD, but to all of them. Some days, when it feels like your other kids are being neglected, you won’t feel like it, but when you do get to actively parent, you’ll be more present and do things better. I think there’s something about being a carer that just helps you be more caring; it gives you a different perspective, and that’s actually a really good thing. You won’t see it today, but a year looking back and you will.
It’s okay to write a blog from your point of view, and not your child’s. You are in a world where you are always putting your child well above yourself, and you will learn to see the world through their eyes. That doesn’t mean you aren’t allowed to have your own eyes, your own feelings, your own highs, and your own lows. You own part of this journey too and you can own that without feeling guilty.
A year from today you will sit back and think, "Woah, we survived that first year and we killed it!" Speaking from personal experience, we had a terrible pregnancy, a newborn, hospital visits, crazy, crazy, crazy challenging days where we totally lost it, but we survived and did it well.
High fives, back pats, a big victory dance. The world didn’t end and with a year of intense therapy and kinder, Jack started to thrive. He improved, and new strategies made things easier. Fantastic therapists and teachers made a difference.
Most of all, life didn’t end.
This post originally appeared on The Younger Mrs Flanagan and has been republished here with full permission.
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