Lessons

8 things I’ve learned in the year since our Autism diagnosis.

Today marks a year to the day that my eldest daughter was diagnosed with Autism Spectrum Disorder.

This day sits heavily in my heart because while I accept and embrace my daughter for everything she is, a year ago today, was one of the hardest days of my life. But in the last 12 months so much has changed, and I’ve learned a lot about what it means to be a parent to a child with autism, as well as learning more and more about my daughter as an individual.

So today, instead of feeling sadness, I want to share the biggest lessons I’ve learned since the diagnosis.

1. The diagnosis is just a word.

Prior to the diagnosis I spent pretty much every waking minute actively seeking answers to what was going on with my daughter. A year ago today, I received the answer… but it didn’t really change anything.

While I have found the diagnosis helpful in some respects (like being able to explain her behaviour, stop analysing her actions and questioning developmental delays), it has also been unhelpful. Once the autism box is ticked, it is seen to be the cause of almost all symptoms and behaviours (such as anxiety or sensory issues) and so she receives limited support. This is despite support being available for neurotypical children who can suffer from these things as well. There can be a failure to look at her needs as an individual (with or without autism), and if she didn’t have the diagnosis, we’d at least try and find an answer to what was causing these reactions. Just because she has autism doesn’t mean it’s okay for her to suffer.

Autism is also a spectrum disorder, meaning it affects people in very different ways. So while I now know my daughter to have autism, I won’t ever truly know how this will affect her through her life – and so it changes nothing. Ultimately, now I have received the diagnosis, I’ve been able to accept it, make peace with it, and move forward…but I still have questions.

2. Celebrate EVERY win.

For some time I used to find it difficult seeing other children progress as it felt like gap between my daughter and her peers was continually widening. Seeing my friends singing with their children, reading books with their children, playing games with their children, it was a constant reminder of what I was “missing out on”.

This mindset is toxic – comparison truly is the thief of joy. By concentrating on what I didn’t have, I missed the very beauty of what I do. So instead I started a diary to keep a record of my daughter and her progress so that over time I could look back and see how far she has come.

This change in focus from what others do to what she does has been fundamental to my happiness, and her self worth! I can be excited with my friends and their children as I look forward to sharing those moments with my daughter. And if we never do…I’m okay with that too… as we’ve had our own share of different and just as special moments ourselves.

No matter how small the milestone might seem to others (eye contact, following an instruction, making a speech sound) – CELEBRATE IT! You are allowed to and she deserves it!

3. Decide what is truly important in life

Before having children I had all these ideas in my head about what parenthood would be like and the type of parent I would be. Having a child with autism has made me question ALL the things I previously thought to be important in life.

For example, my daughter struggles to sit for any length of time, and so meal times are usually chaotic with me trying to get food in her mouth (she doesn’t feed herself) while she entertains herself with something else. I thought we would have lovely family mealtimes every night but I prioritise her being fed over her table manners. Eating out is almost impossible, so we just don’t, and we are much happier for it.

We simplify life and  it makes you appreciate the little things and realise how full of fluff our world really is.

4. People will always judge. It is your reaction that matters.

Before I had a child with autism I was completely ignorant to the condition. So when people judge her (and my parenting), I try and remember that. There are days when I have gotten home and cried ugly tears due to the behaviour and stares I’ve received from other parents, but in my hurt and anger I just try to meet them with the compassion and understanding that my daughter deserved from them. I can only hope that in doing this, the world is filled with more love and compassion. Does it hurt? Yes… but I have built a pretty strong armour now… and I’m a firm believer that love conquers all.

5. Expectations can be as disabling as the condition itself

This is a huge one – I wrote about it in my last blog post. Ultimately, it is so important to ALWAYS remember, she understands more than you think and she is more capable than you think. Believe in your children’s potential and they will too .

I once read an article that explained this perfectly, John Hussman said:

“So our responsibility is to presume that people with autism are competent, and then go about looking for ways to help them demonstrate it. If you’re a parent, tell your child what’s going on in the family, in the world — all the interesting things that you would share with another child. Hold up your end of the conversation even if they don’t hold up theirs. Create teaching opportunities out of their own interests. Give them the dignity to be embraced as ordinary, more often than they are excluded as special. Teach them and read to them even without needing a test at the end. Assume that they listen; that they appreciate; that they love, while we keep looking for ways for their mouths or their hands to tell us.”

6. Sibling love is powerful

I’m not going to lie, at one point I questioned whether we did the right thing in having another child. I worried that she would regress just as my eldest had (and I couldn’t bear the thought of “losing” another child like that). I also worried about the effect some of the meltdowns and behaviour would have on her.

I couldn’t have been more wrong. My youngest, Abbie, loves more fiercely than I knew possible and she has so much resilience, tenacity and compassion it makes me cry. She has an unwavering love for her big sister and is always checking she is ok. She knows when to give her space, and doesn’t feel rejected by her distance. She accepts her for who she is whole heartedly.

Every night, I tell her (and she repeats back to me) that she has strength, courage, beauty and purpose. I could not be more proud of her.

7. It isn’t easy – but it won’t beat us.

Every day brings its new challenges. Whether it is today, when my daughter is in pain but can’t communicate to me what the problem is. Or tonight, when after taking care of 2 sick children (and a sick self) I have to finish my work only to spend the rest of my evening reading education rights and guidelines so I can be the best advocate for my daughter.

When you think you’ve cracked something, and found a way to manage a behaviour it all changes. There is also the never ending feeling like I’m not doing enough.

It’s a constant fight. Fight for support, fight for awareness, fight for each other. Never did I imagine the strength I had in me to get through some of these times. I don’t have a choice really…. But I know that my daughter is going to grow up feeling loved and accepted and I will do everything in my power to make sure this happens.

8. It can be lonely and support is crucial.

Autism awareness isn’t the same as autism acceptance or even understanding. While awareness is increasing, it is difficult for people to truly understand and to open their minds enough to change their expectations and create a more inclusive society.

I am lucky to have the most amazing support network of friends and family and I am so grateful to be surrounded by people who understand.

The biggest shout out has to go to my parents. My mum is here for us day in and day out. At a time when her children have flown the nest and she thought she’d have her life back, instead she takes care of us all. She is there for my daughters and I through absolutely everything and I don’t know where we would be without her. To top it all off, it is my dad that spent today summarising a 150 page document about education rights to 11 pages which I can read tonight (so I don’t lose my mind!). I would be lost without them. And my daughters are the luckiest girls in the world. Thank you Madders and Padders. <3 I am so grateful to you.