Over the last couple years Kai has experienced a significant mental health decline and has been hospitalized twice for suicidal ideations. Part of his treatment plan includes placing him in a school that is appropriate for his needs, which does not exist in Wichita. We need to raise $12,000/month for approximately 16-18 months to send Kai to a therapeutic boarding school. I'm aware that this is an insane amount of money to try to raise but I'm stubbornly determined to bend reality to my will in order to save my kid's life.
The long version:
Our 16 year old son Kai, who has asked to be called "Alec" recently (we're trying, it's hard), was dealt a pretty difficult hand early in life. His bio mom, who I was married to, had mental health issues (some of them hereditary) and wasn't as consistent a presence in his infancy as he needed, and then she died from cancer when he was 18 months old. For a while after that it was just he and I, and then I met my current wife, his stepmother, when he was about 4 years old. We've noticed autism-like behaviors here and there ever since he was little, and he experienced a few developmental delays, like not growing out of baby talk until he was around 7 years old.
Starting right from kindergarten he always had trouble at school, behavioral and emotional. He had unpredictable "meltdowns" in which he'd throw himself on the floor, cry, shout, sometimes throw things or shove desks. He was never violent towards other people, but sometimes was so disruptive that his classroom would have to be evacuated until he could be removed or calmed down. In seventh grade we got him on a 504 plan at school to try to give him some accommodations, but that never really made much difference in his success. We tried to get him an IEP in ninth grade, but his school refused to give him an evaluation for that. (We're hiring an attorney about that which is another expense.)
During eighth and ninth grade things really started to go downhill. His incidents at school started being less "meltdowns" and more "shutdowns". His self esteem vanished and he started failing almost all his classes. His mental health went into decline and we started seeing a lot more problematic behaviors at home. He started cutting himself, isolating in his room, and he ran away from home a couple times (never for very long, thankfully). At home, every second of every day is spent dealing with his issues or trying to head them off. He argues, yells, curses, screams, punches holes in walls and doors, all of this in front of his little sisters who are 3 and 7 years old. Understandably, they get very upset. And I have to admit that as parents we haven't always been equipped to respond appropriately to him, which has contributed to the trouble at home. These last couple years he also started refusing to go to therapy at all, and in the spring 2021 school semester, not only did he refuse to do the schoolwork, but he started refusing to even go to school some days. He spent the days holed up in his room playing computer games all day. He was 15 years old, 5 foot 7 and 130 pounds. You can't physically force him to go to school or therapy, and when he digs in his heels, it's not worth the intense, explosive argument that is certain to happen if we push too hard.
In February of 2020 he was hospitalized for a week in the pediatric psych unit for thoughts and threats of self harm.
He was hospitalized again for the same reason in August of 2020.
I just want to interject here and ask you to imagine, as a parent, sitting late at night in a quiet hospital emergency room with your suicidal child who is asleep on a hospital bed, knowing they have asked to be checked into the hospital because they don't feel safe with themselves. You try not to wake them up with your crying. It is utterly heartbreaking and terrifying.
We've spent thousands of hours and thousands of dollars trying to figure out the root of his troubles, with very little success. He's been in therapy since first grade and has been given multiple full psych evaluations and been through every kind of therapy and testing imaginable. Two pediatric neurologists, full autism testing (negative), occupational therapy, CBT, DBT, the works. We do know from his testing that he has extremely low processing speed, but only recently did anyone bother to explain to us what that actually means for Kai and how that affects him. It plays into every part of this, particularly his academic difficulties. He's very smart, but he learns so differently from everyone else that traditional school just does not work for him, and since his grades suffer, he does not believe that he is smart or that he can be successful in school. This is a part of why the schools we've tried so far have failed him so miserably.
No one has ever been able to give us a good diagnosis or a treatment or medication that's been effective. For a couple years we've been desperate, hopeless, in crisis, alone, not knowing what to do or where to turn, and no one has been able to help us.
Finally, knowing we couldn't give him the support he needed, we started looking into treatment options outside the home. Eventually we learned that there is in fact a next step, a formula, a higher level of care. We also discovered one of the biggest ways that our country's health care system is so hopelessly broken, and the reason I'm here asking people to give us money: the utterly astonishing cost of such treatment. When I saw how much these programs cost, my brain screeched to a very angry halt for a few days.
The formula is a two step treatment plan that takes one and a half to two years. The first step is to send the child to a Wilderness Therapy program. Click here to read about how they work, but the short version is: This is a reset for the brain, a chance to get away from all the environmental stressors at home, and for many kids it's a chance to detox from addictions. In Kai's case, he had a screen/technology addiction. This step breaks down their maladaptive habits and gives them some better coping skills, and primes the neural pathways in the brain for reprogramming. An average stay for a kid like Kai at a Wilderness Therapy program is around 12 weeks and costs around ~$55,000.
We hired an educational consultant and she helped us select a Wilderness program, blueFire Wilderness Therapy in Gooding, Idaho. We asked for help from friends and family and we were so fortunate that their generosity was enough to allow us to send him there. I dropped him off on March 10th, and that is where he is now.
We did not come to the decision to embark on this journey lightly. This was a desperate last resort for us, and we honestly believe that Kai's very life hangs in the balance. We believe this is a potentially life-saving treatment path.
A few kids can go directly home after Wilderness, but for most kids, the next step is to move on to a Residential Treatment Center or Therapeutic Boarding School (that's basically two names for the same kind of thing). Here, the kids solidify and build on the changes they made while in Wilderness, strengthening those new neural pathways and mental patterns, and practicing their new skills and habits. An average stay at one of the Therapeutic Boarding Schools we're looking at is 16-18 months, at a price of $12,000 per month.
These are numbers that are absolutely out of reach for most people, including us. My anger stems from the notion that certainly it's not only people with great financial resources who need this type of help, so why is it that only they can access it?
Eventually I got so angry that I simply decided that this price was nothing more than a number, and I refuse to let a number scare me away from giving my son the treatment he so desperately needs. I didn't know how I was going to accomplish this, I just knew that I was going to do it.
His therapist at blueFire is outstanding. We speak with him weekly, and every other week Kai joins the call. We've seen progress that never would have happened at home, but it's slow, and it's not enough for him to come home yet. He's slated to graduate from blueFire in just a few weeks, and the recommendation from his therapist and our consultant (who are working together) is that like most kids, he needs Therapeutic Boarding School next. The advice is to take him directly there from Wilderness without delay and without bringing him home in between. Our consultant has recommended a few schools based on Kai's specific needs, and we are in the process of making our selection. So in a couple weeks we need to fly out, pick him up, take him to the school, check him in, and fly back home. We can't book travel until we know which school he's going to (that's on us to decide), and we can't enroll him until we are confident that we have enough funding in place to at least get started (that's where you come in).
The three schools we're looking at are all very close in terms of tuition cost. They are:
- Heritage Spark
- Logan River
- Boulder Creek
Of course we are squeezing as much money out of our own budget as we can for this, and it's a good chunk of money but it doesn't come close to $12k/month. We also are assuming that once we raise as much as we can here and from friends and family, we will have to borrow the difference. We don't especially want to do that, but again, we are determined to do whatever we have to do in order to get Kai the care he needs.
This is so hard. You never hold a baby in your arms and imagine this for their future. I never imagined myself having to write a GoFundMe, and honestly I kind of hate it. I hate that I am asking people for anything at all, especially what feels like a blank check: As much as you're comfortable contributing, monthly, for ??? number of months. (I don't think GFM actually has a monthly setup, so I guess we're just doing our best here.)
Even though things were really bad at home before Kai left, we miss him terribly. We don't want him to have to be gone for another year and a half. His 3 year old sister is hardly going to remember him. His 7 year old sister misses him. We all do. At the same time, with him away, the emotional space and energy has freed up for us to care for ourselves and each other, which we weren't able to do adequately before. And the ultimate goal here is for us to be able to reunite as a healthy family, for Kai to be able to come home and stay home as long as he needs to, and for home to be a healthy, safe place for him. The work he (and we) are doing while he is away is so that he can come back home.
We are absolutely grateful for every single penny anyone is able to send our way. We know we can never repay this kindness and we hope to somehow find ways in life to pay it forward. Mostly, we hope that this can change the trajectory of Kai's life right now and alter his neural programming in a way that will help him to be as successful in life as he can be. As a parent, that's all you really ever want for your kids.
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