Mum's Instagram life journey with a disabled son helps others

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image copyrightPaige Norman
image captionLincoln's parents say it can be tricky to balance the different needs of their children

A mum who used social media to avoid having to repeatedly explain her disabled son's conditions said his story has supported other families.

Four-year-old Lincoln has multiple rare conditions, including one meaning the two sides of his brain are unconnected.

His mother Paige Norman, 24, from Norfolk, said the candid account on Instagram had reached out to parents to let them know "they're not alone".

"They all appreciate having someone there who understands," she said.

image copyrightPaige Norman
image captionLincoln has multiple conditions including epilepsy and a sensory processing disorder

Lincoln began having severe seizures at five months old, sometimes up to 70 in one day.

Months of tests brought more distressing and complex diagnoses including infantile spasms, sensory processing disorder, chromosome abnormalities and dysphagia, which has affected his ability to swallow.

Ms Norman, from Great Yarmouth, turned to Instagram as a way of avoiding repeated conversations about his conditions.

"The hardest thing was so many people love and care for him and I didn't want to relive [his diagnoses] all the time and explain over and over again, but anyone can read that," she said.

image copyrightPaige Norman
image captionMs Norman says Lincoln has to "prove himself" every day for "rights we all take for granted"

At four, Lincoln has the developmental age of an 18-month-old, and has no pain threshold which his mum said could be "frightening".

"He sensory seeks by headbutting walls, and kicking and biting himself," Ms Norman said.

His disabilities mean his family miss out on moments many take for granted.

"He used to say 'mum' but he stopped doing it. It's heartbreaking that my boy can't say my name.

"He doesn't like the birthday song - it makes him really sad - so we can't sing happy birthday to him."

image captionPaige Norman says Lincoln is "a blessing" in their lives and the "cheekiest little boy ever"

She said balancing his needs with those of her one-year-old daughter Juneau was hard, but sharing their daily lives on social media had helped them as a family and connected them with other parents in a similar situation.

"We all go through the same troubles, like getting stick if you park in a blue badge space, funding problems.

"Things people with 'typical' children don't understand, things they take for granted."

View this post on Instagram

*Trigger video** 4 years ago today. Our parenthood journey we thought we knew came to a halt and replaced with our SEN journey. 4 years ago today Lincoln had his first seizure leading to scans and tests showing he was actually born with an absent corpus callosum and 3 chromosome abnormalities leading to all his other diagnosis. It’s become some kind of weird anniversary for me, all the emotions I spend my life trying to bury come up. I feel sad, angry, grateful and most of proud of the obstacles Lincoln has had to overcome. • I’ve spent the last 4 years thinking this happened to us as some sort of punishment for being a total bastard when I was a teen but the more I get to see Lincolns personality come out I realise it’s a blessing to be able to call him my son. Every single day he gets up and he fights his way through life, basic rights that we all take for granted he has to prove himself for. He’s headstrong, stubborn and the cheekiest little boy ever!! The things we have achieved in the last four years are all things we never thought he would do and yet he still keeps surprising us!! • The video shows Lincoln having a left sided focal seizure, some people will think it’s odd I’ve posted it but this was our ‘norm’ for so long, these seizures although don’t look as dramatic as the ones on casualty are the reason he has left sided hemiparesis #epilepsy is not spoken about or the dangers are not taught enough! (Ps the bus journey was a disaster, loved looking at the window got pissed off and started hitting himself everytime it stopped to let someone on/off 🙈🤦🏼‍♀️) #specialneeds #gdd #epilepsyawareness #acc #agenesisofthecorpuscallosum #specialneedsmum

A post shared by Paige Norman (@paige_lincoln_juneau) on

Ms Norman said she had supported parents through complicated medical tests and shared coping tips.

"Having someone to turn to knowing all the different feelings, you mourn the child you never had and go through the jealousy of seeing 'normal' children and their family do things you can't do.

"It's nice to have someone to tell you those feelings are normal and okay… and know you're not alone."

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