Over my eight-and-a-half years as a parent, I have experienced many highs and lows. My daughter Amelia is deaf and on the autism spectrum so it hasn’t always been a smooth ride, but there’s been a lot to celebrate too.
What happens when you aren’t necessarily looking is that you begin to accept the situation you’re in. You don’t become an expert on parenting, but you are the person who knows your child best – how to help them, how to survive the harder years and recognise joy when it’s in front you.
Here are just 5 of the things I have learned as the mother of a unique and amazing young person who never fails to surprise and challenge me …
1. Take care of your health
For me, this means exercise, exercise, exercise. Did I mention exercise?
I have always been active but after Amelia was born and things started to become difficult, I made time whenever I could to be outside, to run, to do Pilates, go for walks, whatever I needed. This has been the single most important survival strategy for me because every time I’ve been able to find space for myself and switch my chaotic brain off for an hour I have always felt revitalised and ready to go back into the parenting zone.
I’m taking care of myself so I can take care of Amelia, which takes more endurance than any marathon.
2. Listen to your instincts
There have been times when I knew that something was seriously wrong with Amelia’s health and wellbeing before others were prepared to admit it. That voice in my head that spoke to me at night, saying, “my girl is in trouble and needs help”.
There’s no harm in seeking advice if it turns out that things are OK, but in my experience, that inner warning system is usually buzzing for a reason. With Amelia’s autism this meant getting to the best paediatrician for deaf-autistic children, someone who recognised her problems immediately and responded with a plan of action.
Back your knowledge of your child first and foremost.
3. Always accept help
I’m no hero, even if I fancy myself a bit of a weekend warrior on the track. There’s nothing to be gained by hiding in your home bunker and not accepting a lifeline if it’s offered to you in good faith. If you are tired and overwhelmed there is nothing more important that saying yes to that person who is offering to share the load with you for a few hours.
On one of my worst parenting days, I didn’t think, I just drove to my Mum’s house and she took Amelia from me while I dried my tears and calmed down.
Letting people in where you can is not giving up, it’s survival, pure and simple.
4. Make no apologies
As the parent of a child with disabilities, there are many occasions where you are asked to fit in with social situations that are not really set up in your child’s favour. It’s no one’s fault, it’s just that for a long time events like birthday parties were extremely difficult for Amelia to handle. And we tried to participate, we really did, until I had a psychologist-led epiphany about it all. Why was I so worried about what people would say if we didn’t attend something or had to leave early before Amelia had a meltdown?
It’s hard to remember, but I have learned to shrug off that guilt and only do what is right for my daughter at all times. Her needs come first and my sanity, well, a close second.
5. Be an advocate
It’s a fact of life as a parent that you will have to act as your child’s advocate in certain situations. For me, there hasn’t really been a choice about this. If I don’t make sure that people understand the nature of Amelia’s disabilities, then she will lose out.
It could be small yet important things, like reminding people that she’s deaf so please make sure she is facing you when you speak, and turn off loud music or televisions when she is around. Or it could be developing relationships with doctors who let me call through requests on the phone so that Amelia doesn’t have to endure unnecessary wait times. Autism and waiting rooms are a hellish combination.
Sometimes I’m so tired I don’t feel like putting on my advocate cape but what is my tiredness compared with my daughter’s needs? Exactly.