‘When Kisses Don’t Make It Better’
*Lesley has lived the heartbreak and hope of parenting her 13-year-old son, who has bipolar disorder; in the journey she found inspiration and now shares her story:
Tell us about your son’s diagnosis
At six years old my son bounced from very deep depression to inappropriately hyper and having no regard for his personal safety. He was just not himself—not my son. After several years, which included spending time in an outpatient therapeutic day program, with some progress and more setbacks, he was finally diagnosed at nine years old, with pediatric bipolar disorder, generalized anxiety disorder, Asperger’s and OCD.
As a parent, what is it like to go through this experience with your child?
It’s truly heartbreaking to see your child suffer at any age but to see my son suffering like he was at only nine years old left me broken inside. Nothing I did helped. I cried morning, noon and night and stayed up for days researching ways to help him. I made appointments with every “expert” I could find. To see my child lose interest in his family, school, friends and his hobbies was so hard to comprehend—how could a child this young have to endure so much? I also felt like a failure; I’m his mommy, my kisses used to make everything better, but now he cringed at my touch and looked at me with so much hatred and pain. I couldn’t fix this and I just wanted to hug him and let him know everything was going to be OK.
Please describe your family’s journey:
My marriage suffered. My daughter, who’s younger than my son, dealt with issues of her own. She started to resent her brother for “ruining” our family time together i.e. vacations, outings, holidays. I developed depression and just withdrew from my friends and family. I had a job that I loved and traveled often, but I had to quit and find a job with no travel and that allowed me the freedom to leave when I had to. We lost friends who were confused and frightened by what our son was going through.
Beyond medication, what other treatment strategies do you have in place?
We see an amazing therapist who really gets my son and who my son actually likes. I have also started using various therapeutic oils that I diffuse when he is sleeping, in his bath and for him to roll on topically. We have coping skills for when he feels triggered and have started canine therapy. I know we might have to explore medication as he gets older but for now we have found success with what we’re doing.
What is your most valuable coping strategy?
Definitely helping to refocus and help my son reduce his emotional reactions. As he is maturing this has become more successful for him. I also find inspiration in my son’s good days and also in the friends that I have made who understand and embrace us.
How has this experience changed you as a person?
I have become more patient and more empathetic to others. All disabilities aren’t visible and you never know what someone else is going through. I used to go with the flow and take things at face value. Now I challenge things that don’t feel right. Just because someone has an MD after their name or principal in their title doesn’t mean they always know what’s best for my son.
What’s the most important lesson you’ve learned?
That life isn’t always perfect. That this isn’t about me—while it affects me, this is something I will never understand and will never truly know how much my son struggles. And no matter what, I will always be there for him even if it’s from other side of the door and he wants nothing to do with me; I will always fight to help my son and find what will work for him so he can lead an amazing life.
Your thoughts about the medical system that helped your son:
Doctors in general need to listen more and stop overusing the diagnosis of ADD/ADHD. That’s all we kept hearing. I wish I didn’t put all of my faith and trust in just one doctor and had not spent all those years accepting the wrong diagnosis.
What advice would you give to other parents?
Remember you are not alone—there is a network of people out there going through the same thing. It’s also OK to feel sorry for yourself. I used to feel guilty if I needed a break or felt this was too much for me to handle as his mom, but it’s alright to feel like that. Finally, never give up! Keep fighting and keep loving that child of yours.
How is your son doing now?
He’s doing well and resembles more of himself lately. His grades have gone up and he’s wanting to see his friends more and more. He has his days but it’s been awhile since we have had any manic episodes. He is 13 now and as he hits puberty I worry because his hormones get out of whack, but he’s also able to communicate to me more of what he’s feeling. I’m wary of getting too optimistic but I do enjoy the good days … a lot!
**Lesley, not her real name, and her husband live in Northeastern United States with their son and daughter and a canine therapy dog. She wants other parents to not feel guilty, to realize they are not alone, and to keep fighting!