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Breaking point: Lack of mental health options leaves Dickinson family in sea of uncertainty
Dickinson Press - 8/4/2021
Aug. 4—At nearly 12 years old, Grayson Johnson looks like any ordinary sweet boy. Deep inside his eyes, however, reflect a different story — one that is all too common and regretfully ignored. Adopted at 2.5 years old, Grayson joined his new forever family with a lot of uncertainty. Born addicted to opiates and exposed to multiple other drugs in utero, his new family's love and compassion sought to provide comfort where before there was only abuse and neglect. Grayson suffered two broken legs and was left with those injuries untreated for long periods of time.
Now his new forever family say that they are at a crossroad, as developmental disabilities, ADHD and a host of other issues have turned a once loving child into an "aggressive and mentally unstable child."
Lack of resources in the West have only exacerbated the issue as The Press delves into the the lack of mental health services in western North Dakota in this first article of a three-part series called, Breaking Point.
"So you look at all that's stacked against him, love isn't enough." — Tana Johnson
Love isn't enough
In a sit-down interview with Tana Johnson, Grayson's adopted mother, she detailed in disquieting and emotional outpourings her and her family's ongoing battle as the mental health field for this region is all but non-existent. For the past nine years, Grayson's parents have been searching for answers to help their son. These range from speech and occupational therapies to spending a total of six weeks in a mental health unit. Grayson has had service providers for a period of three years, but due to the extent of his behavioral disabilities, the Johnsons couldn't maintain the needed staff.
Being that Grayson's parents both work in the psychiatric field, Johnson wonders what other people's situations are like.
"... If we are educated people in the psych-world, and we as parents... with a village wrapped around us can't even handle it, my fear is what are other people out there doing. How are other people out there handling it? Because I've really come to a breaking point. It's hard to say," Johnson said, collecting her emotions. "I've had many, many, many breakdowns (and) you feel like a failure as a parent because you can't give your child what you know could benefit them. But then you have to stop and put on the brakes and then you have to remember how his little life started out. That's where all the love that you want, it's never enough."
"When we got him, he barely could talk. If he wanted let's say a cracker, he couldn't just have one cracker. He had to have two crackers — one in each hand — and he wouldn't eat them. If you psychologically look into that, he wanted to make sure he had food in his hand. So that tells you a lot of what went on." — Tana Johnson
Being born to a mother that used drugs throughout her pregnancy and left him alone as a young child, Johnson noted that is one of the most devastating aspects to Grayson's story. The adoption of Grayson's older half brother played out differently, mainly because the Johnsons took him in at 19 months old whereas Grayson was 2.5 years old when a friend of his biological mother finally spoke out.
"For me, that's very difficult because he could have been saved as an infant, and I do say saved," Johnson said. "There were times of abuse, neglect... He had abandonment issues too. He would be left with some people, saying, 'I'll be back in a couple of days,' and she wouldn't show up for a couple of weeks. So there was very much inconsistency. Clearly, no bonding with a certain person.
"When we got him, he barely could talk. If he wanted let's say a cracker, he couldn't just have one cracker. He had to have two crackers — one in each hand — and he wouldn't eat them. If you psychologically look into that, he wanted to make sure he had food in his hand. So that tells you a lot of what went on."
Johnson continued, "The greatest cognitive and brain development happens between the ages of zero and three. So when you're two and half years old, you're almost too late. I say too late because... you can wrap all the services around these children that you want, but sometimes it's just not going to be enough."
Brain is only an organ
As a psychiatric nurse, Johnson has worked with people throughout the years, trying to break the stigma of mental health and educating people that the brain is simply an organ.
"(It's) just like diabetes (or) insulin in the kidneys... Why is it so difficult for people to think about a brain?" Johnson said, noting, "I want people step to back and go, 'Of all the organs that something should happen to, it should be the f**king brain.' Because there's so much s**t in there.
"... So why is it so difficult for us, as a society, to accept an illness of something that is so complex in our body than it is just to accept that somebody has diabetes and they need insulin for the rest of their life."
"It's f**king unbelievable what some people have gone through, because it's just not aggressive behaviors hitting — it's threatening to kill, it's threatening with knives, it's wanting to die themselves." — Tana Johnson
Now at 11.5 years old, Grayson is on individual educational plans for both intellectual and behavioral disabilities. Johnson noted that he has two paraprofessionals that split up the day, "because it's very difficult for one person to spend an entire day with him."
"The key thing that is all over the place about reactive attachment disorder is that no amount of love can make these children better; it's not about love. Do you love them? Do you have a bond with them? Yes, but it's not going to fix what happened for those two and a half years. You just can't. You lost your time," Johnson said. "And I think that was the most frustrating part for me is that unfortunately, we didn't get him until he was two and a half. So when we got him, he had horrific night terrors like four times a night. Some of them could last up to 40 minutes — just screaming, kicking. It was absolutely horrible."
One time, Grayson's behaviors were becoming so unbearable that Johnson was forced to drive him directly to an emergency room in Bismarck. Upon arrival, medical personnel told his mother that there were no beds available. Meanwhile, Grayson continued to act out — hitting and kicking.
"I broke down and I said, 'I'm not leaving here until I have a place for him.' Well, we stayed for hours but guess what? There was never a place. And I had to drive home with him at 2 o'clock in the morning. Something's wrong with that picture," she said, sighing, "because either somebody is going to get seriously hurt or die, or end up committing suicide for not willing to wait."
Though it's not easy to reflect, Johnson said she finds support from other families through a Reactive Attachment Disorder Facebook group. Other families share what they're going through on the social media platform, Johnson said, with some revealing that they've had to lock their entire family in one room, leaving their adopted child in another room just to sleep peacefully at night.
"It's f**king unbelievable what some people have gone through, because it's just not aggressive behaviors hitting. It's threatening to kill, it's threatening with knives, it's wanting to die themselves," Johnson remarked.
Diagnoses of reactive attachment disorder, ADHD, emotional dysregulation, developmentally disabled with a low IQ score has steered Johnson down every rabbit hole across the state and country, seeking assistance for her son.
".. When things started slamming doors in my face and doors were not opening, that's when I got scared. Because at first, I was hopeful. But I tell you what, my hope has definitely depleted as the doors closed and none were opening," she said.
Finding grace for Grayson
Due to the increases in Grayson's aggressive behaviors and emotional dysregulation, the Johnsons are looking at residential placement. However, the past three years have led to dead ends, with services denying Grayson due to his age and low IQ.
"When it comes down to it, it's very, very frustrating because you feel your hands are tied and that you have no control over the situation. And so, because he's been denied really all over the country in all seriousness, I thought outside the box. I tried to look for private placements," Johnson said, adding, "When you look for private placements, the dollar signs pop up."
Some of the private placements can cost up to $3,000 to $5,000 per month. Though Johnson has found a Montana residential cabin boys ranch that is an ideal setup with equine therapy and outdoor activities, it costs $2,700 per month with a $1,700 down payment. Unfortunately, the family's insurance is not accepted out of state because it's private pay.
Currently, Johnson's friend Kristi Ridl is planning a mental health benefit for Grayson to raise enough funds so he can attend the Montana residential program. The event takes place from 6 to 9 p.m.Aug. 12, at Fluffy Fields Winery, featuring a free bouncy house, DJ entertainment, a silent auction, a $40 guided painted hosted by Jessica Dukart-Bell as well as raffle items, including merchandise from Tigirlily and Miranda Lambert.
If the benefit can raise enough funds along with the approval of adoption subsidies from the State of Minnesota, Grayson could potentially be enrolled in the Montana year program and receive care by Aug. 25.
For Grayson's parents and his siblings, this is a "family's journey of the unknown," Johnson said, adding that his older half brother and sister by adoption are struggling to cope.
"Our mental health, being the parents, and my children's mental health has suffered because of Grayson's," she said, pausing, "behaviors... People go, 'Can you imagine what's going on in his head?' No, it's probably like scrambled eggs sometimes; it's just chaotic as all hell right?
"So you look at all that's stacked against him, love isn't enough."
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