Developmental delays and quality of life
When a child is diagnosed with a developmental delay, it can throw your world as a parent upside down. The narrative we are told about ‘what to expect’ when you become a parent rarely includes parenting a child with a disability.
There is an array of ‘how to’ books and countless articles on sleeping challenges, breastfeeding struggles, teething fun, toddler tantrums, eating solids, nappy explosions and all the in between. You have a fair idea that your world will not be the same and that it will now revolve around your new addition. But the experiences of raising a child who can’t roll, crawl, cruise and walk at those ‘typical’ baby milestones ages, is seldom mentioned.
Having a child with a delay or disability isn’t on most of our radars and for many of us our child’s delay may come as a complete surprise. Because isn’t it ‘normal’ for babies to develop at different rates and at different times? They will do things when they are ready, right?
For some it can be a slow realisation that your child isn’t achieving things by ‘the book’ and it may not be until you have a routine check-up that it hits. When an eyebrow is raised after you respond “no” to them being able to do x, y, z yet.
Our first thought when we hear the words ‘Development Delay’ are often shock, surprise and fear. Questions begin to circulate and absorb your mind and Dr Google may become your new best friend. What does this mean? Will my child reach their milestones? If so, when? What does this mean for their quality of life and their future? If only I had a crystal ball to know what this all looked like and meant!
All completely natural questions that you’ll continually ponder when your child’s development veers off the ‘typical’.
It’s a life changing moment, one that we may initially feel a range of emotions about. Fear and sadness for the unknown. A child with delays means unique needs and this most likely involves Early Intervention, a term that you may not have been too familiar with but will soon know ‘all the things. Your child’s journey will involve a variety of different therapy treatments from speechies to OT’s to PT’s and all that’s in between.
It can be a long adjustment period and there is no right or wrong way to find your new groove and balance. It won’t take you long before you are in full force with taking on a role as a fierce advocate for your child, finding a new normal as you cater to working arrangements and a life around appointments. You eventually surface with a whole new perspective – and set of epic organisational skills!
Perhaps you initially brought into the stigmatic view that a disability or delay was a negative thing, something to be pitied and an experience less than typical. But your child and the journey you embark on forces you to re-examine these ideas. You are uplifted with a new perspective and the things that used to seem like big deals are no longer on your radar.
Your child will continue to demonstrate their strength and resilience as they just ‘get on with it’ and hit those milestones when they are good and ready!
You witness the joys, laughter, and happiness as you would with ‘typical’ kids.
They thrive on love and contentment, just as all children do! They may need to work a little harder to reach milestones, but you are soon enough blessed to realise that life is a lot more than just walking, running, and talking. Its far simpler than that.
It’s the little things that become the big things and when those milestones are reached its not a simple tick off the list. It’s much more than that. They are hard fought and magical, astounding ‘take your breath away’ moments. Your perspective shifts and you are profoundly changed in those moments.
The challenge of raising a child with any developmental delay often doesn’t come from the disability itself, but from the perceptions of society. As parents this motivates many of us to focus on not changing our child but the world. A world which is inclusive and adaptive, a world that accepts and includes our child for exactly who they are.
So, what is quality of life like for a child with a developmental delay?
Really, it encompasses the things we all strive for. The simple things like happiness, love, and connection. To be included and represented. It’s not without its challenges and there will be many hard days, but hopes and dreams most definitely still exist and your child can and will still have a wonderful life.