Sometimes it's a struggle just to get Sean Connors to come upstairs.
His actions often depend on the day or if new people are around, his mother Kerri Reid explains, because of his anxiety.
It takes him longer than other kids to adjust to social situations. But this behaviour is nothing compared to where Sean was two years ago.
In January, at eight years old, he's in school full-time for the very first time.
At three, Sean was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD).
But that was only the beginning for Reid's family.
It's been a much longer journey for her and husband James Boyd, addressing other symptoms, finding a medication that works, facing stigma and pushing against a system that doesn't provide the support she needs for her son.
"It completely limited his chance at experiencing life. That was a huge concern, not only having him physically and emotionally struggling, but his quality of life and ours being so diminished," says the Prince George mother, who describes Sean as unique, inquisitive and active.
Listen to an audio piece with the family, as Reid discusses their journey to diagnosis and finding a medicine to help her son:
"He has so many other extra hurdles that, because it doesn't show on the outside, it's difficult to know what's going on internally."
He deals with emotional spikes and anger. She says his rage can be misinterpreted by some who dismiss it simply as bad behaviour or bad parenting - when it's actually "a picture of internal anguish for him."
"That's heartbreaking as a mom to watch a child struggling," Reid says.
"It took me up until this year to speak publicly about what we were dealing with out of fear of what other people might think," says Reid, before listing his various conditions "so far": severe ADHD, anxiety, sensory processing disorder, night terrors, vocal tics and oppositional defiance disorder - which makes him resistant to change and authority.
"The most important thing for me is for him not to be defined by a list of conditions."
Reid doesn't like these labels, but she knows they're necessary if she wants to advocate for her son, get him the support he needs and connect with other parents who have similar experiences.
That's why she's agreed to speak at Variety's Show of Hearts Telethon, held Saturday and Sunday in Coquitlam. The family is traveling down from Prince George to do the fundraiser and encourage donations after her first-hand experience with the non-profit's mandate: "stepping in where health care ends."
"That's truly what they do," says Reid.
In the past 50 years, Variety has raised more than $89 million for B.C.'s special needs children. A small piece of that went to Reid's family to help fund a costly medication, that isn't covered, but has made all the differencing in managing Sean's symptoms.
And finding the right medication was its own journey. At first Sean was prescribed a stimulant, which doesn't work for him and in fact made it worse.
It's not a cure, Reid stresses, but after two years it has offered stability and a chance at a better life for them all. At about $200 a month, it's a lot for a one-income household.
The organization's compassion and help has been one positive in an otherwise frustrating system.
"They understand - that's one of the best things about Variety," she says, adding the organization has helped fill a gap that Reid sees in the system - including health care, school district and Ministry of Children and Family Development - where children like her son don't get the support.
"They all have different criteria, different sets of rules and they're not always communicating with one another," she said.
And the north faces special barriers. She says there's a gap for support for school age children.
"That type of evaluation does not exist in Prince George for a child of his age," she says, and when she was referred to BC Children's Hospital, it took a year and a half before he had an appointment for a patient assessment.
"There are only certain conditions in the mental health realm right now that are really supported financially and with respite - giving parents break - and ADHD is not one of them," she adds.
That disorder comes with a host of judgement and one she hopes, by sharing Sean's story, she can push against.
"There's so much misinformation about ADHD and those conditions actually being a neurobiological condition rather than something that a parent may or may not be doing or characterize a child as misbehaving.
"The goal isn't to just slow him down, the goal is to help him be able to reach his full potential and not have to struggle with these unforeseen obstacles."
Supporting each other
When Reid met with a local specialist, she asked if there was a support group in Prince George for parents.
"(The doctor) said, why don't you start one?" Reid recalls with a laugh.
At the time it was too much, but in October 2014 she started that group, which has a Facebook page called Thursday's Child Champions. They try to meet once a month and have planned social evenings and a summer barbecue - but even that can be tough.
Parents are so busy and so exhausted, "they can't get out of the house even for a once a month meeting," she says.
She's trying to build up more of a network because she'd like to help fill the gap she sees in advocacy support for parents with special needs children.
The fear of judgment can often stop parents from reaching out, she says, but she wants to push against the isolation parents face.
"There was a huge gap and a huge hole in support for parents in our city," says Reid, who also started a blog called Mommy Musings: The Lighter Side of A.D.H.D.
"It's a multifaceted problem but I'm willing to put whatever energy I have left into it, not only for Sean but for anyone else who needs help."
