'My son needs around the clock care. This is what I want you to know.'

When my son Miller was born with a mop of hair and big brown eyes, my family felt complete. As our third little boy, I couldn’t wait to bring him home and watch him grow up with his two big brothers.

Yet nothing could prepare me for the days and weeks that followed discovering via his newborn hearing screen that Miller had hearing loss.

This led to further tests that revealed that our simple, happy life as a family of four would be forever changed.

Watch: What you need to know about hypotonia. Story continues after video.

Within his first year of life, Miller was diagnosed with Hypotonia, Dyskinetic Movement Disorder, and Global Developmental Delay.

Three years on, our family has settled in to our new normal, but my son needs around the clock care. This is what I have learnt.

Finding care is (really) hard.

Kid-free date nights are non-existent and getting care isn’t as simple as calling up a babysitting agency to book a sitter for the evening. Because Miller can’t sit up by himself, crawl, walk or communicate, looking after him is physically (and emotionally) demanding. 

My friends and family would offer to look after him but the older he gets, the more guilt I feel for asking them for help as his needs are now more complex.

Image: Supplied.

Thankfully, I discovered a parenting app called Kiddo that allows me to find and book carers for Miller that are NDIS accredited and equipped to manage his special needs.

Communication is non existent.

I spent six months completing a certificate in Auslan so we could eventually communicate using sign language. But because Miller has yet to develop fine motor skills, he’s not able to respond back. Most of the time it’s a guessing game because he can’t point to what he wants.

Other kids can tell their parents if they’re not feeling well and they understand why they have to wait until after dinner to eat dessert. Unfortunately, there’s no reasoning with a child who struggles to hear and can’t speak. When I tried to explain why we couldn’t swim in the pool, he started hitting me. Funnily, the only thought going through my head was that Miller could *finally* throw a temper tantrum!

Appointments are my life.

My social calendar consists of coffee with our paediatrician and lunch with our ophthalmologist. I’ve had to surround myself with friends who are understanding and accepting of the fact that my priorities have changed. When it comes to public hospital appointments, if you can’t make your spot it’s often a matter of months before they can fit you in again so making this appointment becomes my biggest priority above my personal and social appointments 

Instead of staring, start a conversation.

Before having a child who lives with a disability, I probably would’ve made awkward eye contact before heading the opposite way too... but that doesn’t help you understand and accept those who are different. I love nothing more than when parents or kids come up to us at the park and ask us about Miller’s walking frame or his hearing aids. 

When kids ask what "those things" are on his ears, I explain that just like kids who wear glasses to see better, Miller wears hearing aids to help him hear. What might be an uncomfortable conversation starter for you is another opportunity for me to educate others on what it’s like raising a child with special needs.

Image: Supplied.

The future is unknown.

As a parent, you want nothing more than for your kids to grow up to become healthy and happy adults. But for me, I don’t know if Miller will ever walk, be able to get a job, or meet someone to fall in love with. We’re doing everything we can to give him the best chance in life including attending regular month long intensive therapy programs. But the truth is, the future is unknown – and that’s terrifying.

Parenting is hard enough but raising a child with such specific needs alongside my two older sons is *even harder*. Yet platforms like Kiddo make a huge difference in offering a reliable solution for specialised childcare that offers peace of mind for parents like me.

Although the future is scary and raising a child with special needs has its challenges, I want other parents to know that it’s incredibly rewarding to see the compassion that Miller’s brothers and other kids in the playground show towards him. I think everyone can learn a lesson or two about acceptance from them – I know I have.

Did you know we have a whole family focussed community you can join on Facebook for more discussions like this? Join the Mamamia Family Facebook group and follow Mamamia Family on Instagram and tell us what #parentinglookslike for you!

Feature Image: Supplied.

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