Mum's anguish: 'I would lie even though I knew it was wrong'

This young mum says she lies about her son’s disability to some strangers because it’s easier than explaining, but the onus shouldn’t have to fall on her.

Anna describes her son as “a very happy little boy”, but underneath his cheeky smile, she knew something wasn’t right.

Call it mother’s intuition or a delay in him reaching his milestones, but Anna and her partner noticed Hugo was different.

“He really struggled with tummy time lifting up his head, trying to stand open up his hands,” she told Kidspot. 

“It wasn’t until he was around six months when we were like, okay, something needs to be done.” 

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Have you seen a cuter smile? Source: Supplied

An expert opinion

After consults with a mixture of allied health professionals, Hugo’s physio first suspected there could be something more.

After performing a Hammersmith Infant Neurological Examination, also known as a HINE, which is used to assess the neurological development of infants, including motor skills, muscle tone, and reflexes, Hugo was scored within a range of mild to moderate cerebral palsy, but this wasn’t an official diagnosis.

Their world changed forever

“It wasn’t until we were approached by a team at Randwick Children’s Hospital…and he was assessed by a neurologist, a physio, an OT, and a speech therapist, and they gave us the devastating news that Hugo has cerebral palsy,” Anna shared.

“That day felt like our world was crashing down. We knew he had it, but getting that official diagnosis was really, really hard.”

Since his diagnosis at the start of the year, Anna had channelled all her focus on supporting Hugo, “After receiving that diagnosis, we just continued to go to his physios, his OT and his speech and focus all our attention on… making sure that he gets the best chance in life to succeed, and it really has definitely paid off,” she proudly divulged.

“He has improved so much since we got the diagnosis, and he recently had his 18-month report. 

“It was such a positive report which gave us so much hope and happiness, knowing that everything we have done for Hugo is really really paying off.”

Hugo with his mum Anna and dad Patrick. Source: Supplied

Well-meaning or just plain rude?

Despite the incredible progress Hugo is making, Anna revealed one challenging aspect she struggles with the most, “I have people come up to me at the shops and will ask how old your son and when I say he’s 19 months old, they will say oh I bet he’s running around and keeping you busy.” 

When she informs the well-meaning stranger that Hugo has cerebral palsy, she is met with an array of difficult follow-up comments, such as “he doesn’t look like he has cerebral palsy”, to which she then begins educating them on the different types of the condition, something that can take a moment or two.

“It’s only recently that I started telling strangers when they asked me those questions,” she told us. 

“The truth is I would just lie and say yeah, he is, but deep down, I knew that’s the wrong thing to say.”

“It’s really hard for families who have a child with a disability having to explain everything.” Source: Supplied

Forever explaining

Anna gave us some insight into one of the frustrations of being a parent of a disabled child, “It’s really hard for families who have a child with a disability having to explain everything,” she said. 

“I am forever explaining to people my child has cerebral palsy. I had a lady at the shops once ask if he was walking and running? And I said no, my child has CP, and she looked at him and she said are you sure?”

While many of us would have rolled our eyes and told the woman to jump on her bike, Anna decided to educate her, “I had to explain to her there are different types of cerebral palsy. She was really taken aback and not knowing what to say.

“After I spoke to her more about it, she thanked me for giving me this information. I had no idea.”

This acts as a reminder when approaching strangers not to assume anything. Be respectful and open to listen.

Our hearts are melting. Source: Supplied

Some advice from a parent in the know

When we asked Anna what advice she had for parents going through a similar situation or awaiting a diagnosis for their child, she shared these insights.

“Know there is support out there, speak to someone about how you’re feeling... I follow a few cerebral palsy pages, and I vented and spoke to people, and the feedback and the messages I got from families going through the same thing or similar things that I am going through was really reassuring,” she said.

“When you picture your life with children, you never think your child’s gonna have a disability. 

“Knowing that Hugo has a disability was hard to process and wrap your head around, but seeing the improvement gives us hope.”

“Another piece of advice I would also give is, if you have a gut instinct that you think something might be wrong with your child or your child isn’t hitting milestones, definitely seek advice,” she added. 

“I’ve been told that doing an early intervention has honestly been the best thing. We picked it up fast. We got to see physios at a young age, and we’ve seen a big improvement. His therapists have said, ‘You’ve done the right thing; early intervention is key.’”

You can follow Hugo's journey on his Instagram account.

Originally published as Mum's anguish: 'I would lie even though I knew it was wrong'