A storm
I realized that one of the reasons why I blog, if no other than to vent my frustrations, but to help me articulate my thoughts and feelings; to sort them out and see them in black and white. Like the comfort and satisfaction that poetry had provided me at the very start of my children’s autism journeys. I realized this the other day when something terrible happened and I wanted to escape deep into the comfort of my laptop and start plucking away at the keyboard. My beloved laptop. My escape.
Meghan came home on Friday for the start of her week-long visit (just 5 short weeks from the last tumultuous home visit). My parents were here—babysitting me—as they always do when she comes home every other Friday. They want to be here to help me just in case Meghan has a bad day—simply put. I don’t love that they do this, but they feel the need to be here for at least a few hours, knowing that Meghan’s father will come through the door to stand guard that evening. Stand guard, silly huh? But that’s how I see it these days, and it’s sad. In order to have Meghan spend time at home with her family, there needs to be this sense of alert status, code word: “I need your help” or “come now” then the 6’2, 220 pound man comes running to protect the rest of us. It’s just sad.
On Friday, after I served my parents their tea, I heard Meghan struggling in the other room; I quickly glanced her way and knew it was too late. I told my parents (who I think are starting to become a little bit hard-of-hearing) that Meghan is upset and to move… Red alert, for Christ sake, so MOVE. But they were too late, and a bit stubborn too.
It all happened in slow motion. She ran down the hall pulling at her hair. She looked like a 5’5 girl possessed by the devil. Honestly, this is what she looks like when her anxiety and temper have gone over the edge—she becomes a different person—a scary person. My parents were sitting at the kitchen island, the same island that Meghan runs to to “clear it off” (autism talk for destruction) and my mother held up her hands to Meghan to see if she could get her to stop. Wrong move. But how could she really know; she believes she’s there to help. When Meghan is like this—angered to the point of no return until she becomes satisfied by a certain level of destruction, or violence—like a train wreck with no breaks until it is slowed down after breaking through a few walls, then one must move away for her. My mother was at the front of it and didn’t move away. Meghan grabbed her by the face and neck and started to hurt her. My father had to use all his power to pull her off my mother and drag her to a chair. It was as sad and destructive as it sounds. Meghan’s hand was bleeding from biting herself so hard; my mother’s eye and neck were bleeding from being squeezed at the power of rage; both were a bit black and blue when it was all set and done.
I got to view the scene, even though it happened lightning fast. I got a chance to take a close look at my dysfunctional life; my dysfunctional family that I helped to create. And Meghan’s autism, or wrath because of her autism, is the culprit. I find it hard to celebrate family life when my child is damned by what seems like a curse. I know its got to be hard for her—a constant struggle and a dark storm within herself, but it’s also hard for the rest of us, too, and it’s not acceptable to live with.
I’ve spent over 14 years fighting for the very best life for Meghan (for both my kids) and now I am barely holding on to an ounce of hope for her. The energy and determination I once had are dissipating; the passion, bleeding. It just doesn’t want to come as easily and powerfully as it once had before.
And at this very moment we are working on trying to help her understand that because of the lack of snow plows on the road this afternoon, the morning after a blizzard, she cannot go to Stop and Shop, but she doesn’t understand. Sometimes the best way to describe Meghan is like a 2 year old (you know, the terrible 2s) but in a strong and sturdy 14-year-old body. If it sounds like a nightmare, it usually is…. Actually, I am resigned to think that it may never be easy working and dealing with Meghan—ever. And if this isn’t the most devastating part of being her mother, then knowing that I will be relieved when she has to go back to school, certainly is. It’s tough to admit, even to myself.
mama edge says:
December 20th, 2009 at
I hope it helps to know how much you help me by “admitting” these things. I feel exactly the same way about my son, Taz, though when the thoughts are mine, I think “For shame.” When the thoughts are yours, I think, “Well, of course she feels that way.” Perhaps I can learn to have as much compassion for myself as I have for you. And perhaps this blog will give that gift to you, as well.
It is hard, my blogfriend, really, really hard. No shame in admitting that.
Tanya @ TeenAutism says:
December 20th, 2009 at
I’m so sorry, Holly. I wish I had something insightful to add, but I hope that my empathy will help. You are always in my thoughts.
Holly says:
December 21st, 2009 at
Thanks for your understanding and support. And thanks, Mara, for your helpful perspective; it’s very comforting, it really is! Sometimes it’s hard to see ourselves and our lives as clearly as someone else sees them. One great reason to blog!
Candy says:
December 21st, 2009 at
Holly, I read your blog all the time, and want you to know you are doing the right thing by writing about the truth…the way you feel within you, and around you. Yes it’s tough, but it would be much worse if you held it in. Anger turned inward results in depression. You have never met me in person, but I’m walking this journey with you when I read your experiences.
Kate says:
December 22nd, 2009 at
I know as we all do you are doing the best you can. There is no shame in being relieved when she goes back. Man, it’s gotta be tough, I can only imagine.
Holly says:
December 22nd, 2009 at
Thanks for your comments and support. It’s good to hear (read) what you all think too. Our lives with our autistic kids, or autistic ourselves, are complex and we need to know we can listen and support each other.
Candy, you are right. If we can’t admit how we feel, then we become depressed and resentful of our lives (um, been there!!!). I know you share some of the same experiences, so I’m glad you tell us what you think and how you feel!
Rachel says:
December 23rd, 2009 at
You are so okay. You are more than okay, and all your feelings are spot on and right. If you weren’t saying these things, I’d be worried that you were holding everything in and making yourself sick.
Keep tellin’ it like it is, girl. It helps everyone.
Danna Skoy says:
December 24th, 2009 at
Thank you for sharing your story. It is really hard to read. I’m sorry your Mom got hurt and that your girl had a tough moment. Not a great way to start the holiday.
I’m wishing you all the best. Please take good care.
MiaHysteria says:
December 29th, 2009 at
Sigh. I’m so, so sorry.
This is exactly how we try to describe our son. He is like a 2 year old, maybe 3 (cognitively I think that’s truly his age – 3) who is 7, but his body is that of a 9 year old. It’s so incredibly difficult. It feels so incredibly hopeless at times.
My parents babysit me as well. They’re always a phone call away. Always calling to see how his night and day have gone to gauge whether or not they should just offer to be there, or just come. It’s terribly emasculating (I can’t think of any other word…maybe de-mothering) to feel as though you can’t ‘handle’ it yourself, but truly, we can’t.
I think my mind is starting to wrap around what you’re saying, what you’re not saying. I hear little inklings of it in the back of my mind, but refuse to listen. We have to have hope don’t we? And when it goes…that’s not a thing a mother wants to think of.
So, thank you for saying this. Thank you for making me feel normal. I don’t know if that’s all I wanted to say, so much as I understand.
Fearless Folks … autism and beyond … » Christmas rings in good spirits… and solutions says:
December 29th, 2009 at
[...] are probably waiting to read how the rest of Meghan’s week went after the very first day. Well, it went well. She was fine and had no other outbursts. Typically when she’s home for [...]