Susan's Blog

Wednesday, December 19, 2018

Motherhood OCD

About 25 years ago, I suffered from acute Obsessive-Compulsive Disorder. It took the form of going back and checking. Really ugly stuff, I’m not going to describe it here. Until I had a very wise therapist who really understood — that, combined with Prozac, and the day came where I felt the tormented tickle of “you better turn around and look,” yet I walked on.

Moving forward is particularly difficult for me because I often still dip into obsessive-compulsive disorder. Now it is not the way it was back then, it is more of an idling, stalling engine. It stays put, rather than whipping me backwards. In other words, it is bearable. But that, combined with my sharp and heavy mood swings, make it a challenge to see my way out of the chaos that is my life. I hear things on two levels, all the time. I hear the meaning the person is trying to convey, while I hear all the lifelong messages in my own mind — emotional clouding of the picture, checking and re-checking the words.

This condition is worst when it comes to Nat. I have conversations about Nat and I’m parsing the intended message, right along with, “Wait a minute, is this message I’m hearing okay? What did I do, is this my fault? Did I screw something up, or did they?” Right away it’s either-or, right away I’m defensive and really it’s all because of fear. I get afraid that my whole world is going to collapse — usually in terms of Nat. I go right to “okay, a bad thing is happening, just like always, what did I miss, what should I do now?” It is so hard to sit and understand, to sort out the actual important message that I’m supposed to hear. I can do it now, with great effort. And my husband Ned’s cool water, his ability to stay clear.

My panic about how the world is treating Nat — and by Nat, maybe I mean me? — is ingrained, layered into my skin, muscle, and blood. Like any new mother, I held him so close because that was my job, but unlike many non-autism mothers, I never let go. I couldn’t. And so my own development took a turn as a young woman because I had a baby that no one understood. My child has struggled to learn, to grow up, and to move away from me but I have been SO afraid to let that happen. So neither of us has grown completely in that sense. I’m not saying I was right to be this way. I’m saying I can barely help it. You could say it’s a co-dependent thing Nat and I have. Even when he’s pushing me away with man hands, I let him, but I feel my stupid veins stretching right back out towards him, looking to reconnect.

Having a child no one gets is probably the most elemental scary thing that can happen to you as an adult. It’s no coincidence that my OCD began when Nat was a toddler. You have this fragile, beautiful innocent little being in your care, you seeded him, nurtured him inside your own body. You made him. And now he’s kind of being rejected by the world. Well, that’s how it felt to me, I think. It’s a Refrigerator World, not a Refrigerator Mom. The Mom is the opposite of the Refrigerator, she’s a hot oven that has no thermostat.

Every doctor had a theory, and when it didn’t apply, they shrugged. Every school had a dogma, and when Nat continued to defy their ethos, they kicked him out or they held on but their anxiety was transmitted to me. Now I don’t even expect people to understand Nat. My wounds for him are just weakly scarred over, lumpy and prone to ripping open again. Even when I have evidence that people do understand and care deeply, there’s a part of me that remains unconvinced, the OCD part. I never have had the feeling of sweet, deep rest. I have never been able to let go of him entirely.

It is not healthy for either of us, each being so tangled up in You.

People smile at this and say, “well, sure, you’re the mother.” But I don’t think they get how it actually feels, to be the one and only for someone you love with the force of a hurricane, an earthquake, a tornado, a shark attack. So when he’s out of my sight, I am always always wondering — will he be safe?

Am I consigned to always be dealing with Nat this way? How do I heal? How do any of us heal the ravages wrought from ignorance. My rage at the stupid ignorant world pours down on all of you and then it’s all rained out. Then, out of nowhere, I’m bizarrely hopeful again. Flying by the seat of my moods.

And so with Nat, I go in a loop. It’s relationship OCD.

Will I ever be able to walk on, to believe in his wellbeing, without looking back?


OMG!! YES! YES! YES! Susan, this is an incredible piece of writing!
I get it. I really do. Felt the weight and meaning of every word!

I don’t have OCD, but I can totally relate to how you describe how your son being rejected by the world played a part in the development of your OCD.
My experience concerning the “ravages wrought from ignorance” have left me emotionally empty, depressed, cynical, and just basically like negative space most of the time. I can’t use words to describe how I feel like you can but I know that I am not the happy and hopeful person I was before realizing how mean the majority of people are on this planet! Seeing the look of pure dread on people’s faces when you drive up to Sunday school, a family get together, or even your own best friend’s driveway, because they don’t want to deal with my behaviorally challenged child, changed me. The isolation and social stigma hurts in a way I can’t even describe. As your child is rejected so are you.

Mental health treatment for me should have began the very day the autism diagnosis was given to my child because at that moment, I didn’t have a damn clue what the “ravages wrought from ignorance” were going to do to me!

Thank you so much for writing this. It is a reminder that I’m not alone. Surly society will change one day. With a 1:40 ratio how could it not. Recently I was with a group of people and as we all talked one thing became apparent, those of us with disabled children out numbered the others.

— added by Win on Wednesday, December 19, 2018 at 1:00 pm

Regarding Nat, it’s not OCD. It’s reality. Those of us who have children who may not ever be self sufficient, are going to be thinking, obsessing, stressing about who will take watch of such children , when we, the parents, are no longer able to do so. With the exception of very few lucky people, there are no substitutes. We don’t even want our other children to be stuck in that position. If even that close in the circle of family and love, is not the normal, natural transition to care, who do you think wants to do it and will take anywhere near the care in doing so? Sadly, most of these kids are going to be abused when there is no close watch on their care. It’s impossible to eliminate the abuse factor even when we are right on top of their care.

You look for the best possible group home or nursing home, try to transition your child into it while you are still able and active, and hope s loved one, a sibling, Cousin, someone who is younger than you are is also familiar with the situation and get them to be active so their stepping into the primary role is not such a huge step. And you need a back up forthst person too.

What I am seeing now is depressing. It’s not good at all. Things also change so quickly and often these days that it is just about certain any situation you find will be soon obsolete. This is why I mourned, parents grieve when the disability prognosis is such with our children that they will not likely be self sufficient. It’s a heart ache because it does not bode well, rarely goes well. That’s the reality of the situation

— added by Cath Young on Wednesday, December 19, 2018 at 2:55 pm

Thank you for sharing this! While I do not have OCD I still have experienced much of the same stuff as you…the deep constant anxiety and sadness. “You have this fragile, beautiful innocent little being in your care, you seeded him, nurtured him inside your own body. You made him. And now he’s kind of being rejected by the world. Well, that’s how it felt to me, I think. It’s a Refrigerator World, not a Refrigerator Mom.” So true!

— added by Nancy Bea on Wednesday, December 19, 2018 at 10:06 pm

Susan, THIS!!!!!
While my William is not autistic, his development challenges resulting from Cerebral Palsy have left him and I in this very same relationship OCD cycle. You nailed this and I really can’t even articulate how much it helps me when I read your what you write and then understand feelings and experiences I have in a whole new light. This is sometimes all just too hard.

— added by Liz Fahey on Wednesday, December 19, 2018 at 11:28 pm

Oh Susan! I too have a form of OCD — I pick mercilessly at my chin hairs with tweezers to the point of scarring when I get stressed out. And like you, when something is going on with Max (or Julian or Sam or all of the above), I go into a tweezing frenzy as I worry and think and re-think. I saw you on the clip about ‘Nicky’s Law’and my heart just broke for Nat and for you and Ned! I am so furious on your behalf; on behalf of all our young men (and occasionally, women) who are so vulnerable and are not being adequately protected by our state or by our society generally.
“My rage at the stupid ignorant world pours down on all of you and then it’s all rained out. Then, out of nowhere, I’m bizarrely hopeful again. Flying by the seat of my moods.” — You capture exactly how I feel all the time, toggling between rage and hope as I try to make sense of something that has happened or potentially might be happening to Max. And all I have to go on are Max’s altered mood, heavy and reddened eyelids, and his allusions to “naughty little tank engines that won’t shunt” that are “just like Max”! When your adult child’s self-advocacy skills are limited to speaking in riddles that most people will not make an effort to understand, and when you aren’t there to decipher and translate for him, how can you trust the world to do right by him? You can’t. Period. So I thank God that you always manage to articulate what we are experiencing, Susan! By doing so, you remind us that we are a robust community of loving, OCD-addled parents who “get” each other, who will make the effort to “get” each others’ disabled adult children, and who all have each others’ backs. Here’s to us white-hot Oven Moms!

— added by Teresa Peacock on Friday, December 21, 2018 at 9:01 am

%d bloggers like this: