Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

Is a Diagnosis Really Important?

Is a Diagnosis Really Important?

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.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Amy Sweeney

Meet Our Blogger

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 stop him! He loves playing with his big sister.

View Amy’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 4 months on

Purchases on £99+

UK Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of £99+:

No Interest if paid in full in 4 months on purchases of £99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

Purchases of £98.99 or less:

Buy now and pay over time with PayPal Credit when you spend £98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...