Not Everybody Gets To Go Back To School…Ben’s Story

Ben’s Story…My story.  I certainly hope that one day the stigma and isolation change for my son.

This morning, my newsfeed is filled with grinning faces of children in their back-to-school outfits, backpacks pulled up on their shoulders and new shoes on their feet. This morning, however, I’m sad. I’m sad that I won’t be sharing photos of my son. I’m sad that my child and I have missed this experience again. Instead, this is the experience we are sharing: the experience of disappointment, sadness and helplessness. This is Ben. Ben is 9 and should be starting 4th grade. Instead, Ben is stuck. He’s stuck in our home. He’s stuck with labels. He’s stuck feeling like his home is a prison and feeling like he doesn’t deserve to be a child. Ben suffers from mental illness. He suffers from crippling Anxiety, Bipolar Disorder, Sensory Processing Disorder and ADHD. Most importantly, of all things Ben spends his days living with, he suffers from the stigma that comes along with his illness. Ben hasn’t been in a traditional school setting since November of 2012. I do not condone or excuse the behaviors that led us to make the choice to remove Ben from traditional schooling and try homebound schooling. I will say that I didn’t expect it would lead to the continuing condemnation of my young son even two years after the fact. In the past, there have been behaviors that were violent in nature. There have been threats. There have been times where he has run off. I understand. Ben understands. He hasn’t had any of those behaviors now since last September. All I can do about those things now is to explain the “why” in the hopes that people would understand how he got to those places where those responses felt necessary. I try to continue to provide my son with every possible intervention in the hopes of avoiding him ever having to feel this way again and to make things productive for him. Anyone who has ever suffered from mental illness, or loves someone who has, knows that treatment is hit or miss. Most illnesses come with an almost guaranteed treatment plan. This isn’t one of them. It’s not a broken arm that you put in a cast and 6 weeks later you move on. It isn’t a viral infection. You don’t wait it out and it gets better. It’s much more complicated than that. You take the prescribed meds in the hopes that they will work in the capacity they are meant to work…towards a therapeutic goal. Sometimes, meds just don’t do what you’d like. For Ben, this was the case. Two years ago he was on a medication that made him aggressive. His anxiety was heightened, as were his “fight or flight” responses. Not only did the medication not work, it also enhanced Ben’s troubles significantly. Was it the result we wanted to see from a new med? No. Was it what his doctor wanted or expected? No. Was it effective for his school day? No. It wasn’t what anyone wanted. It made all our jobs harder. Most of all, it has made Ben’s job harder. Since then, meds have been changed and we’ve found a treatment plan that’s working toward that therapeutic goal. Again, we have had no behavior outbreaks since September of last year. We have made it almost a year! Time to celebrate? Time to move “past the past” and on to something better? Sadly, no.

Ben is now a different kid, but…

Ben’s therapist, who is a part of this treatment process, reports a significant maturity and positive change. He deems Ben ready to reenter into traditional school. His Occupational Therapist reports, “he’s a different kid!” and deems him ready for reentry as well. His doctor is pleased with the medications and therapies being used now. Still, he’s here. Why? It has been reported that some parents have complained they don’t want their children around my son. The faculty wants him in another school. To this I say, “your reasons are fear based on the opinions of people who haven’t seen my son in a year. Rather than listening to what the parents and professionals are saying and starting him off slowly, with the supports he needs, I am supposed to see if another school will ‘take him’ hours away from our lives. I am to drop everything, buckle in my 9 year old, along with my toddler and my infant, and not only am I to make this drive, but, do it twice a day”? I was told this shouldn’t be about my convenience. Trust me when I say this, “nothing to do with this fight for Ben has been about my convenience”. There is a difference between convenience and realistic expectation. Even if they pay for my mileage (so I can afford the gas), it’s not realistic. It isn’t realistic for anyone in my family! Most recently I was asked by a teacher, “Why don’t you just move”? My thoughts: Why??!! Why give up my home in a safe, quiet community where my boys have a yard to play in? Why give up my job and ask my husband to give up his? Why uproot my family and start all over to make a new life somewhere else just so that we don’t bother anyone in this community? Well, my answer is simply because it isn’t what’s best for my family AND it isn’t a realistic expectation.

Written By Amanda Casey (Mom) Fairmont, NE, and Cassie Pfeifer (Aunt) York, NE.

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