parenting · special needs parenting

The One Thing I Don’t Really Blog About

Happened this morning. As it does many mornings, afternoons and evenings. 

Everything was just ducky. The past few days have been dicey, but I thought this morning that we were dialed in. 

Then we weren’t. 

The bus arrived and Ben lost it. I did everything I could to right the ship as quickly as possible, but in a flash he was past reason. 

So I picked up a thrashing 80+ pound child and carried him down the concrete garage stairs, terrified that this would be the time one of us would be seriously injured, and toward the driveway. 

Sometimes angels take the form of ordinary people, and the nurse on Ben’s bus saw our plight and ran to our aid.  She took one arm and I took kept the other and together we safely got Ben loaded. 

All parties involved agree that his behavior will only escalate if we acquiesce even once, so no matter how bad it gets, we proceed. 

Once on the bus he stomped to his seat, but seemed resigned to his fate…with a rebel yell for good measure.  I noticed the icy cold concrete under my bare feet as I returned to the house. My focus off the ordeal of the morning granted perspective and the tears streamed full force, unbidden.  Often I can remain stoic, but not today. 

I don’t blog about these episodes. It seems taboo to share about behavioral and psychiatric problems.  But it’s a big factor in our daily lives.   This story isn’t unusual for us, it’s a frequent, sometimes multiple times a day occurance. 

In addition to his developmental and medical needs, Ben has a “mood disorder”. What that almost certainly means is that he has childhood bipolar, but his psychiatrist doesn’t diagnose bipolar until after puberty. 

Between cognitive delays, autism and psychiatric diagnoses, Ben is unable to manage his emotional responses. He loses his temper and rages with no concern for anything other than his chaotic feelings. No concern for hurting himself or others. No concern for consequences of any type, if you know about brain anatomy and function, in these moments (which sometimes turn into hours), he is operating solely from his amygdala.   

We have tried and continue to try every means possible to help Ben and to control this situation. Currently the best we can do is drop the frequency of episodes from several times a day to several times a week. 

Now imagine, please try, your beloved, cherished child behaving in a manner that is hell-bent on destroying himself, his environment and all people present. You do everything in your power to help him because he’s your treasured child, but you’re impotent. 

We have experienced the heartbreak of cancer, and yet this heartbreak is of an entirely different level. 

With cancer you are met with compassion, love and support. People try to understand and share your burden. 

With mental illness you are met with shame, silence and suspicion. There’s a strong tendency to blame parents or at minimum, indicate that not enough is being done, or that somehow we’re failing to address or manage the situation.  

There is shame and ugliness heaped upon the grief of parenting a child who is desperately sick. 

I’ve never written about this before, and for good reason. I have longed to shield Ben and us from the shame and ugliness of the stigma of mental illness, and because, for some reason, it’s too taboo to be open about such problems. 

But there are others who live this experience. Pediatric psychiatric units are overflowing, residential facilities have extensive waiting lists. Families are living with this in silence. If I don’t open up, who will?  

My plea is that even if you don’t understand mental illness, even if this makes zero sense to you. Even if you think it’s all a load of bull, that you simply show kindness. This part of our story has nearly broken us, and it’s far from over. 

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9 thoughts on “The One Thing I Don’t Really Blog About

  1. I’m so thankful you wrote this post. You’re not alone, and we need to read these accounts. The moms who live with the guilt and confusion of these episodes. Also the moms who sent their kids to school, whose only concern is did I remember to pack her mid-morning snack? We all need these reminders. Be kind. Always.

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    1. I find myself less and less able to relate with typical mom struggles. I know they’re real and I hold space for them because that was my life, once upon a time. But my struggles are so very different than those that most moms share over coffee, and it is incredibly lonely.

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  2. I don’t blog about how Charlie hits himself in the head when he gets upset and irritated. I don’t blog about the times we have to let him thrash on the floor to get it out and how he finds it hard to look people in the eye. These are all things in and on my heart. I’m glad you shared. It’s helping me sort out my own thoughts.

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  3. Thank you for sharing this post. My heart goes out to you. We need to stick together, it’s tough (that’s an understatement) raising children with special needs. I agree with all the comments. I am so happy that I found this blog. The thoughts and comments here are quieting the uneasy thoughts that are racing through my mind and heart.

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  4. From a mama who has watched her child be in that meltdown for hours of every single day down to multiple episodes every day, then every week and now it is a rare event that makes me wonder how we ever survived thoe moments that were hours and days long, hang in there. Know that many are just as broken as you. Know that your child is growing stronger each time you survive the breakdown. I can’t tell you in a comment how far this child of mine has come, but I can tell you that we scarcely let ourselves dream we could reach these stars she dances on.

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