Garrison mom thanks community for rallying around son with autism
"These little things, just a little kindness that doesn't really effect too many people, it's what makes a world of difference to us," Nikki Golden said.
During a time of year when many stop to take stock of what they’re thankful for, Nikki Golden’s list includes her son’s health and kind gestures from those at Brainerd Public Schools and the local Goodwill.
“A little bit of extra kindness can go a long way,” Golden said during an interview Wednesday, Nov. 24, at Coco Moon in downtown Brainerd.
The Garrison mom has three kids — 19-year-old twin boys Bryce and Eric and 17-year-old daughter Tylee. The twins both have severe forms of autism and have battled liver disease throughout their lives. Bryce’s problems with his liver started when he was about 10. By the time he was 15, the condition was severe enough to warrant a liver transplant, but the road to get there was not easy nor quick.
About three years ago, he was in complete liver failure and given only a year or two to live without a transplant. But both hospitals at which Golden sought treatment for her son denied him the transplant because of his autism.
“So that's what really started our journey,” Golden said.
According to a 2008 survey led by David Magnus of the Stanford University Center for Biomedical Ethics, 43% of pediatric transplant program coordinators surveyed across the country reported they take neurodevelopmental delay into account in the case of transplants. And because Minnesota did not at the time have any anti-discrimination laws in place against those practices, Bryce’s autism was a barrier to lifesaving medical care.
“At the hospital we were told that Bryce’s life wouldn’t be as beneficial as a typical person’s to receive a transplant, that he wouldn’t be able to give back to the world like a typical person would,” Golden said.
But she knows that isn’t true for either of her sons or others with disabilities.
“What I would like to be shared is that they give different gifts,” Golden said. “They give you the gift of taking everyday things and actually being grateful for simple things in life and to just slow down.”
With Bryce’s condition worsening, Golden couldn’t afford to slow down this time, though. So she left Eric and Tylee in the care of her parents while she and Bryce went to Ohio, which has laws in place against the form of discrimination her son experienced in Minnesota.
"“These little things, just a little kindness that doesn’t really effect too many people, it’s what makes a world of difference to us."
— ,” - Nikki Golden.
After a long wait, Bryce finally got his new liver Sept. 5, 2020, and spent a month and a half recovering in a hospital in Ohio before rejoining his family at home. He handled the surgery well, getting out of bed every day after the procedure and grabbing his suitcase in hopes of going home.
Minnesota has since passed Jonny’s Law, a measure aiming to ensure people with disabilities will not be discriminated against when seeking organ transplants. It’s named for Jonny Hillyer, a boy with Down syndrome whose mother championed the effort on behalf of her son and others in Minnesota with disabilities. Bryce’s story helped push the bill through earlier this year.
It takes a village
Bryce’s illness, paired with the COVID-19 pandemic, meant a tough time for Golden and her family over the past couple years.
It meant social isolation and emotional strain. And with behavioral support for young adults already hard to come by, Golden is grateful the school district came through for her son. In fact, she moved her family to the lakes area from Alexandria about six years ago solely for the special education opportunities at Brainerd Public Schools.
There, she and Bryce found people like Audri Cockman, a behavior management specialist who has worked with Bryce for the past few years and even transferred from the high school to the Paul Bunyan Education Cooperative this year when Bryce moved into the Brainerd Transitions Plus program there.
“It’s a lot of managing behaviors, building social skills, independent living skills — a lot of need-based skills for Bryce and getting him back in the community after having to be out of it so long due to health complications,” Cockman said.
When Bryce couldn’t go to school, Cockman and his other teachers sent him materials to work on because he loves to work. When he was in Ohio for his surgery, other students made artwork and mailed it to him on a regular basis.
“They’re all so different, and their needs can be so different,” Cockman said of the students with whom she works. “But for Bryce, a lot of it is — they want to be a family again and be able to do things together again, and health complications really set Bryce back. A lot of life was on hold for Bryce, and so I feel like he’s just now getting a chance to learn all those things that he would have through his teenage years.”
The next showing of goodwill from the community came from an aptly named place — the Goodwill store in Brainerd.
Bryce’s favorite thing to do, according to his mom, is shopping at thrift stores. But those regular trips were also a casualty of the teen’s poor health and the global pandemic.
And when he did start to get his strength back and have the opportunity to re-enter the community, Bryce’s behavior had changed. Driven by the uncertainty of not knowing how often he would be able to get out and about, he started trying to hoard things when he went into a store.
“He used to be able to go in, grab one thing and walk out,” Golden said. “But it’s just the whole COVID and mental illness and everything that had come.”
For someone like Bryce who is nonverbal and has a hard time communicating his wants and needs as it is, this shift was detrimental.
Law enforcement officers were called to intervene on more than one occasion, and Golden tried reaching out to various other resources but couldn’t find the specialized support Bryce needed. She was at a loss.
That’s when Tabatha Lindula stepped in.
The mother of a special needs son herself, Lindula used her position as the manager at the Brainerd Goodwill to help out, knowing the changes that came with the pandemic were especially hard on those with special needs like Bryce.
“I just adore Nikki and her boys. They have come in here for quite some time, and I wouldn’t treat them any different compared to another customer,” Lindula said Wednesday.
But after a recent incident with Bryce that caused the store to close for a couple hours, Lindula wanted to do more. And because she’s already at the store a half-hour before it opens to the public every day, she decided to open the doors to Bryce.
There are only two people in the store at that time — Lindula and one other employee — so it is a quiet and ideal time for Bryce to come in and enjoy his time there. And after all, Goodwill’s mission is all about helping those who need it.
“And it’s worked wonderful,” Lindula said, noting Bryce is typically in and out of the store in about five minutes with no issues.
“I know (Nikki) has talked about how much we’ve helped here, and my biggest thing that I would say is, I think we’ve helped each other,” Lindula added. “They needed something, and we were able to help.”
Lindula wishes she could have found similar support when she was raising her special needs son, who is now 31.
“I would definitely still agree with Nikki that there's not enough support services out there in the community,” she said.
But the support Golden and her family have received is more than appreciated.
“These little things, just a little kindness that doesn’t really affect too many people, it’s what makes a world of difference to us,” Golden said.