Part 1 of 2 Why I Wish My Kid Had Leukemia
First, let me say a disclaimer. I don’t wish any person, much less a child, to have to deal with a health condition. But sometimes I think it would be a lot easier to deal with Leukemia than it would with mental illness.
A few years back my friend’s daughter was diagnosed with Leukemia. She posted the diagnosis on FB, including the outlined treatment plan, timeline, and overall good prognosis– but long road ahead. I immediately went out and bought some gifts to send to her daughter and son (siblings need attention too) to help with the days ahead. She would continue to update on FB– things would be going well and then they wouldn’t. She went through chemo, she would spike fevers, and end up in the ER. She had a Make-A-Wish trip granted. All of this is posted on Facebook and all the posts I would “love” or send thoughts and prayers to. They would talk about how appreciative they were of all the support from friends and families. Their work was flexible with them and friends helped out. By no means was it an easy journey, but it was definitely a socially acceptable journey. She made it through all the treatments and is in remission and has been for years now. She is healthy.
Mental health struggles are not like this. We knew early on that our son had “struggles.” By 2 years old we were struggling. By 4 he was in Occupational Therapy, thinking maybe we could address some of the “sensory needs” and “self-regulation” pieces. He was anxious but yet wild. He would be withdrawn, but yet take risks. Being in the nursery at church was awful for him. Sunday School he would scream, cry and take off running— and would never come to the point of self-soothing. He loved sports, but wouldn’t step on the field. We went, week after week, We made social stories to prepare him. We did tokens and incentives. Punishments and consequences. Nothing worked.
By 5 he was in therapy. I clearly remember sitting in the therapist’s office as she asked him to write some things he was proud of. He freaked out, tore things up, and climbed the furniture. I cried. I knew that a child with low self-esteem, high anxiety, and high impulsivity did not have an easy road ahead. I work in a high school– I know what path those traits lead to.
So we tried in-home therapy. He kicked the therapists. She told us this was an issue of power and control and we needed to set firmer limits. We would set limits and we would have to physically restrain our 5-year-old to keep him safe. He would cry, He would yell. He would spit, He would fall asleep in the middle of the floor exhausted from the physical and emotional toll it would take on him. We would cry ourselves to sleep.
We tried OT again. We talked to the school. We talked to the pediatrician. There was no blood work to point us in a direction. There was no timeline or prognosis. There were just lots of “possible” diagnoses. We tried a new therapist. We did new testing. This testing showed “off the charts” in ADHD and “off the charts” in anxiety. He was a high-energy, very anxious, struggling 7-year-old. We debated on medication. Would it change him? Would it help? Would it make it worse? Were we taking the easy way out? But tests don’t lie, right? So we started medication for ADHD and saw some results. And then we didn’t.
So we started therapy again. And through therapy, more things started to come out. And behaviors continued at home. Were these behaviors from hyperactivity or anxiety? Then there were things about OCD. Was this different than Anxiety or just another piece of it? Do we need more medications? Different medications? No medications? Was it even OCD? We tried new medications. We tried an online course in battling OCD. Things were better. And then they weren’t.
Things at home got worse. The impact on the siblings increased. The older sibling got angry. The younger sibling got worried.. The impact on my relationship with my husband increased. When your child has Leukemia you work together, as a united front, to fight this awful illness. When it is mental health and behaviors you blame each other. You are too strict. You’re not strict enough. Let me handle this. Why do I have to handle everything? He’s crying. I’m crying. We’re all yelling. And then things get better. Is it the meds? Is it sports? Is it the change in weather? Is this remission? No, mental illness doesn’t have remission.
And then things get really bad. Is it puberty? Are we on too many meds? What if we weren’t on meds? What if we’re on the wrong meds? The mental games never end. And the damage escalates. And the behaviors escalate. If he was throwing up and losing his hair, a symptom of the chemotherapy, we would comfort him. And post it on Facebook. And everyone would send us though