Fellow special needs parents, I want to share a piece of advice with you.
Now, it might sound harsh, particularly if you’re a new special needs parent. You may still feel shell-shocked by your child’s diagnosis, or fragile if you’re only just starting to suspect something may be amiss. You may not be ready to hear this just yet. You may even feel offended that I’ve brought this up at all.
But, this one piece of advice will help you become more positive, proactive and purposeful. This one piece of advice will help you and your child to move forward. It might also save your sanity.
You need to remember – your child’s diagnosis is about them. It’s not about you.
So, what do I mean by that?
It’s easy to caught up in it all. It’s easy to be overwhelmed by everything you face. It’s easy to get swept up in the drive to cure or treat your child. It’s easy to be blinded by your emotions. It’s easy to feel overly guilty and responsible for your child’s situation.
In short, it’s easy to become so engulfed in your own response to your situation that you, somehow, start to lose sight of your child.
I get it – I’ve been there.
However, as special needs parents, it’s vital for us to take a step back. We need to understand that we’re an integral part of our child’s life. There’s no doubt, we’re their strongest advocate and their most passionate protector.
But, we need to remember this special needs journey is not about us. We are important but it’s not about us.
It’s about our child.
Let me put it this way
If you can’t put aside your own emotions, thoughts and beliefs, it’s much harder to be the parent your child needs you to be. I’ve had to learn to be more open to new ideas so I can help my kids the way they need to be helped.
If you don’t ask your child what they want, or if you fail to listen to them, it’s impossible to act in their best interest. I’ve been guilty of this on more than one occasion, especially when my kids were younger.
If you keep believing you know best, without checking in with your child, you’re not helping them at all. As a parent, I’ve made a few decisions I thought were right but they weren’t. Which I would have discovered earlier had I checked with my kids first.
If you cannot accept a diagnosis because of your own fears, you risk their health and happiness. I put off seeking a potential second diagnosis for my son for months because I couldn’t accept he could have additional struggles. This was all about me putting my own issues before his.
So, if you think this is about you, you need to think again.
Why it’s not about you (& why it’s important to understand that)
When it comes to our kids, we tend to be really good at projecting our own expectations, wishes and dreams on them. Sometimes, even before our child is born, we have a plan already laid out for them. Plans for a good school, university, a great career and a family. You wouldn’t be a caring parent if you didn’t have some sort of dream for their future.
However, our kids are individuals. They will eventually make their own decisions and we need to let them make them. Our plans and expectations aren’t necessarily going to be shared by them. We need to learn to let go of our own expectations and realise it’s not about what we want – it’s about what they want.
It can be hard to come to terms with the realities of life. Especially when the reality is, you’re a special needs parent, with a whole different list of aspirations for your child than you originally planned. It can be difficult to let these dreams go and it’s natural to grieve for the life that is not destined to be.
But we can’t let our own disappointment define our child’s lives. We need to acknowledge and put aside our own feelings and move on to support our kids, in whatever way we can. We have to let go of our own emotions and help our kids live the life they deserve, rather than the one we originally mapped out for them.
You can find yourself in a bitter and unhappy place if you define your life through the prism of your child’s experience. It’s the fast track to feeling guilty and taking on needless responsibility for their situation. It’s also a certain route to depression, anxiety and despair.
Accepting that your child’s diagnosis is not about you helps counter the natural feelings of guilt. Focusing less on your own sense of guilt or failure and more on your child will help you become more purposeful. It will encourage you to identify their needs and act on them, rather than dwell on your own mix of negative emotions.
It’s unfair to ignore your child’s needs, because you’re afraid of what that might mean for you. Ignoring their struggles won’t make them go away and it won’t solve anything. You may not want to acknowledge there’s anything amiss but until you do, you are doing a grave disservice to your child.
It’s important to work past your own fears, prejudices and assumptions about a diagnosis or disability so you can help your child. This is not about you or your parenting. This is not about your personal beliefs when it comes to disability. This is about helping your child be the best they can be. When you realise this is not about you, it will make it easier for you to take action and move past your natural sense of uncertainty and fear.
If we truly respect our kids, we owe it to them to put their needs first. This means putting our own fears, beliefs and prejudices aside and doing whatever it takes to help them. It means putting them first and accepting this is about them, not about us.
Respect should guide how we interact and involve our kids in their daily life and in planning for the future. Our kids are individuals in their own right and we owe them the respect and courtesy of listening to their wants and needs and doing all we can to meet them.
This means we have to put our own preferences away and be open to listening to theirs, even if we don’t always agree. Because, yet again, this special needs journey is about them. It’s not about us.
Don’t get me wrong. As parents, we are all integral to our child’s special needs journey, particularly when they are young. In many cases, we are their voice, in addition to being their advocate and parent, even when they are grown.
Our views are important but they cannot overrule or outweigh those of our child.
It’s important we’re not blinded by emotion, belief, prejudice, assumption or fear as we embark on this special needs journey. We need to remain clear-headed so we can act on behalf of the interests and wishes of our kids. We need to continually watch our expectations, accept our reality, change our mindset, take action and give our kids the respect they deserve.
My advice to you as a fellow special needs parent? The only way to do this is to accept this is not about you.