Special needs parenting and the questions we can’t answer

By Kelly Wilton

We talk a lot about community; that feeling of wanting to belong to a group that’s supportive of you in your times of need, particularly when you feel that you’re not able to gain sufficient support from your regular circle.

When we find out we are going to be parents, there’s a roadmap ahead of us of what our future will look like. There are checklists, stages and milestones that can be neatly ticked off at different times, and although these vary from child to child, there is a pattern that, to a greater or lesser degree, can be counted on. These frameworks and timelines put us at ease that ‘it will happen all in good time’.

However, this is not the case with our kids that are born with, or acquire, conditions that affect their development.

When you start to realise that the roadmap is starting to look somewhat different for your child, it can seem that the support network you had is no longer able to give you what you actually need.

It is very hard to understand and come to terms with what is happening to your family, with all the appointments and questions that are being asked of you and your child; then we have to try to relay this information to others. It can be exhausting to say the least!

Honestly, at times, all we really want is to sit down with someone else who just ‘gets it’. Have a coffee, tea (or wine) and just get everything off our chests without having to feel that, along with the 10 questions we have ourselves, we’ll probably end up getting another five in return. Questions that we simply can’t answer!

It’s not that we don’t appreciate the questions, but there is a time when a pair of compassionate ears is much more useful than more questions that will only remain unanswered.

We live in a modern world where the demand for answers is everywhere!  We Google if we want to know something and can get an answer in 2 seconds flat. The difference is that when you are a parent of a child with a complex condition, we can often go years without answers!

A way to not lose yourself in all of this?

Try to focus on the ‘here and now’, the today. What can you do today, that will make you feel like you have been able to enjoy the journey, as rocky as it is, for what it is? Today.

We have to sit with the knowledge that we don’t know the answers, and we may never know.

It takes practice. I am 7 years in with unknown answers with my son. It seems that as soon as we get an answer for one thing, the process throws up another 10 questions along the way!

In time, some of the people around will understand too that this is the path you are on; one where there are very few answers, and they will be happy to just be there with you. These are your support people.

Once you find that peace within yourself, you will show others that it can be done too. And your child – who lives their life in the moment, in the here and now – they are the biggest teachers to us all.

I wish you peace among those unanswered questions so that you may enjoy your here and now with your child who is your beacon of hope that will guide you.