Is a Diagnosis Really Important?

Amy Sweeney by Amy Sweeney Additional Needs

Amy Sweeney

Amy Sweeney

My name is Amy and I’m mum to Wilson aged 3 and Ava aged 4. Wilson has cerebral palsy affecting all 4 limbs along with CVI but it doesn’t let it st...

Well, yes. But why? Why is it so important that a child is given a diagnosis when they have disabilities when all you hear from people is that a label won’t define their child?

In fact, I say it myself!

My son has quadriplegic cerebral palsy but it absolutely won’t define him, despite his disability he does not “suffer” and he is the happiest little boy and brings so much joy to everyone’s life’s around him!

But if someone told me that a diagnosis didn’t matter then I would absolutely argue that it did.

My son wasn’t diagnosed until he was over a year old and as a parent, the worry I went through before I knew that he had cerebral palsy was exhausting. Exhausting maybe isn’t the right word but that’s how I felt most of the time!

The battle to get answers takes almost everything out of you and you just want to scream at people when they say “does it really matter??”

Of course, at the time you probably say something along the lines of “well no I guess not, as long as their happy!”

However, that’s not true at all because not knowing is absolutely heart-breaking. Your child isn’t reaching their milestones or maybe acts in a way that you know isn’t right but no one knows why.

You want the professionals to be doing more to find out what’s going on but there always seems to be a delay in the research with this.

Just as frustratingly, others don’t seem to understand your need for a diagnosis, because it doesn’t change the child does it?

Other than a doctor giving your child a label, which no one seems to want anyway so... it’s confusing right?

And I think it’s something only parents of children with disabilities or additional needs will fully understand.

Because when your child finally gets that diagnosis, all of a sudden you feel less anxious wondering “maybe it’s just me? Maybe this is normal? But I know it’s not!

Is it something I’ve done? I wish I had an answer for people when they asked me what is “wrong” with my child”

Also, the care plan can totally change! Medications can change and referrals can be made.

Before my son was diagnosed he was seeing no one other than his paediatrician.

After his diagnosis his paediatrician changed, he seen a physiotherapist, occupational therapist, play therapist, portage worker, speech and language therapist, orthopaedics... the list goes on.

See how that diagnosis mattered?

There are still many families who don’t have a diagnosis and I honestly hope you find answers soon, I had a year of not knowing and I couldn’t bear to think what I would have been feeling had it been any longer.

So next time you tell someone that it doesn’t matter if their child has a diagnosis or not, please don’t because it really does.


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