2019 update on our life with Bipolar disorder- See below
The day of diagnosis
Today I became a special needs mom. My child was diagnosed with a serious mental illness, and not one I can proudly display on a t-shirt. I can never shout this from the mountain tops as something that needs more attention or make a cute ‘awareness’ profile picture for. Because it’s too dark. He’s going to be aware of it, he’s going to have to live it, and it will affect every relationship he has (professional, friendships, romantic partners…) throughout his entire life. I don’t get to be an advocate parent for this. Not unless my son wants me to, and I don’t think he will. This is a diagnosis you hide, not one you talk about.
The words no parent wants to hear- Bipolar Disorder
Today I was told my son has Bipolar II disorder with a guarded prognosis. I was told to consider calling 911 if my 5-year-old starts saying he wants to kill himself (again). I can’t leave him alone with his brother or the family pets. My sweet, little, smart as a whip, 5-year-old son is considered a threat to the safety of himself and others. We will need to seek out psychiatric care and medication to help him regulate his turbulent emotions. He will be in therapy for the rest of his life. He will be on medication that will require constant vigilance and adjustments as he grows.
When do we tell him that his racing thoughts, nagging self-hatred, and violent outburst have a name? When does he need to know that? How do you tell your child something like that? What will he think of this? Will it be a relief or a burden? We also learned that he is brilliant. Which is, of course, a good thing, but it also means he is always going to KNOW and be AWARE of his mood disorder. Hell, today has me questioning my own feelings, emotions, and responses now. After all, Bipolar Disorder is genetic, and it comes from MY side.
I am sitting here typing this to get it off my chest. To process my own reaction. Right now, only my husband and I know about this diagnosis. No one else. I have friends and family waiting eagerly to hear about how today’s feedback session went, and I just can’t bring myself to call them. I want to keep my little boy pure for just a few moments longer. I want to keep that cloud of judgment out of people’s eyes when they look at him for a few more precious minutes.
I know he’s the same kid I dropped off for a regular day at school this morning, but will I look at him differently when I pick him up in a few hours? Will he sense the shift? I’m holding his beloved Bear right now. Taking short breaks to sob into his flat, threadbare chest. I do not want this life for my son. He deserves so much more than this. Out of all the horrible things that could have passed down to him, why did it have to be mental illness? I’ve spent so much time worrying about the autoimmune disease he has elevated risks for, that I was totally unprepared for this. Not Bipolar Disorder.
We knew SOMETHING was wrong
I was prepared for ADHD. I was even prepared for Asperger’s and anxiety. I was not prepared for Bipolar Disorder. I was not prepared for a ‘serve mental illness’. It’s difficult, but generally ok to say you have one of the A’s (Autism, ADHD, ADD, Anxiety). It’s not really something you share that you have Bipolar Disorder. That’s the type of information that ends conversations, not starts or prolongs them. Where do we go from here? How do I serve my son best? I want so badly for him to have peace in his brain, to love himself, and to be accepted for who he is.
He’s smart, cuddly, kind, thoughtful, and talented. But will any of those things matter when someone learns he has Bipolar disorder? It feels like a death sentence. And I feel like a terrible mother. Not only because I failed my son genetically, but because I can’t save him. My other son too. He’s not unaffected by this. What kind of mother am I that one of my children is afraid of the other?
I am part of the problem
I know I need to get over my OWN perceptions and stereotyping here. I know ANY and ALL mental disorders carry a huge burden, and I do not want to downplay any of it. I just was not expecting Bipolar and it feels so HUGE. Maybe I am making this larger in my head than it needs to be. Maybe someone out there can help me gain perspective. I just don’t know. The only thing I do know right now is that I love my son, and I love my other son just as much. I want so badly for all of this to go away and to make their lives what they truly deserve. I am going to go get a tattoo now.
Later that day
I picked my kids up from school, and I’m sad to say that I did see him differently. He’s still my beloved boy, but I have hesitation when I look at him now. Hesitation that he won’t get to be whatever he wants. Much the same way I lost a world of opportunity when I received my Type 1 Diabetes diagnosis, a lot of doors shut for my son this morning. Hopefully that cloud I seem to see floating around him will fade over time and I’ll just see my boy again. I told a handful of people and didn’t die, but I can still sense the atmosphere shifting when I say ‘Bipolar’. Or maybe it’s just in my head.
Life goes on. Even with Bipolar Disorder
Aside from that shift of mine, our afternoon was the same as always. The struggles did not change because he now has a label. Well, that’s a lie, it’s harder now. I am so much more tuned in to his every move, watching for even the slightest hint of an episode. We talked a lot. I actually listened to him and went into the weeds with him about his feelings instead of ignoring the undesirable behavior like I’ve been taught to do. I think I saw relief in his eyes, but I can’t be sure.
All the typical things still happened, but instead of instant anger on my part, I felt a stab of sadness. Because my boy can’t help it. I can only imagine what it’s like inside in his head. The chaos, the fear, and the anger. It’s not his fault, and now that I know that it’s sadness that reigns over my frustration. What’s it like his brother’s head? The fear, the uncertainty, the need to cling near mom to be safe. Am I safe? Do I provide that for my children?
I don’t know what the future holds and that terrifies me. It also highlights everything I fear about myself watching this beautiful boy struggle so much. How can I possibly be the mother he needs right now when maybe I suffer the same illness? Are MY responses reasonable? Am I modeling correctly for him? It’s gut-wrenching. I just hope that I can be enough for him and that I can help him blaze a path through this dark scary forest he was thrust into.
2 Months Later
The initial shock has worn off, the medication has kicked in, and the team of experts are becoming fixtures in our lives. Every week my son goes to therapy while his brother and I play. We see the psychiatrist routinely to talk about dosage, his teachers and I talk on a regular basis, and I’m in touch with the public school to work out an IEP for next year. Life is moving forward. As for my son, he knows his brain is different, and I don’t censor my talk about his illness in front of him. After all, this is HIS disorder. There will come a day where I bet he asks me to take this blog down, and I will. If he asks.
I have not gone back and read what I wrote on the day he was diagnosed before writing this. So who knows if it even makes sense. But I do know life continued and will continue to….continue. I definitely see him in a different light now, but it’s not a bad light. Maybe a more understanding light? It’s also nice that the mood stabilizer has had an effect on him. The tantrums have drastically reduced, he sleeps better, and I can sometimes see him working through things rather than immediately flying into a rage.
He and his brother play together more often, and he’s not nearly as violent. If things continue along as they have been these past 2 months I think we’re in pretty good shape. There’s some question between Bipolar 1 and Bipolar II and we’ve added ADHD and conduct disorder to the list of labels, but at this point, none of that really matters.
Bipolar Disorder in kids IS real
I know the diagnosis of Bipolar in a young child is extremely controversial. I have had several people question me about it, and if it’s something you really want to learn more about I recommend this book. I’ve been working my way through it in fits and starts and jumping all around, but it has really helped me understand what’s going on with my son.
For now, that is all. More will come. But for now…this will have to do.
To my son in 2018:
I love you, baby. You are going to take this world by storm.
One Year Later…
Wow. This is hard. We have adjusted as well as we can, and our ‘normal’ has somewhat stabilized, but it is HARD. Every single day is very hard. Life is hard for me, it’s hard for his dad, it’s REALLY hard for his brother, and I can’t even begin to imagine how hard it is for my son. The doctors have officially landed on Bipolar 1 as his diagnosis and that what he is being treated for first and foremost. Next up, the ADHD. Lastly, the conduct disorder will be addressed in therapy. It will be a lifelong road for him.
Even at 6 and a half years old he KNOWS what all of this means and it breaks my heart. He already feels the shame that mental illness carries, even though it really shouldn’t. More on that later.
We’ve started public school, which is all honesty isn’t going so well. We skipped all the special plans and procedures after meeting with the faculty prior to the school year to see how he would handle it. It started out rocky, but it looks like it might be starting to get better now that we’ve found an ADHD medicine that doesn’t make him a total monster. Because THAT sucked last spring. The fun part of treating ADHD and Bipolar disorder is that the medications do not play nice. You either get it right or really, REALLY wrong. Thank god his private kindergarten teacher is an amazingly patient woman.
He still has tantrums sometimes, but not as often. Like I said, the medication is helping. He had one recently though. Throwing chairs and trashing his room. It helps me if I compare it to seizures. I know it’s not the same and that he does have control. But… does he really? I’m not convinced. Especially because of the look of sheer sadness on his face after it has passed. He does not want to do that. There is no desire in his heart to behave that way at all. In fact, his heart is so good that I know he is hurting all the time.
But we’re ok
It’s not all bad though. We’ve got a system in place. We have a team of people around us that we’re comfortable with. He goes to therapy regularly and sees a psychiatrist to manage his medications. His teachers are all supportive and he has a few good friends. All in all, it could be worse. The medications are helping, and we talk a lot about therapy, emotions, and what exactly having a mental illness means. I show him my insulin pump and explain that I don’t make insulin, just like his brain struggles with some chemicals. In our house, we do not shame mental illnesses or cognitive differences. Just like we don’t shame me for having Celiac disease or Type 1 Diabetes. I hope it lasts.
To my son in 2019:
Until next year, my dear boy. Like I said last year… You’re gonna crush it out there. You’re amazing.