Monthly Archives: December 2014

dear suzanne – again

Thank you for saying this so well.

a diary of a mom

Dear Suzanne,

It seems we’re here again.

I don’t want to be here. I don’t want to be having a different version of the same old tired conversation. But I don’t know what else to do. I don’t know how else to counter the harm that you continue to do in the name of some terribly perverted version of “advocacy” in my daughter’s name. Your intentions may be pure, but the road to Hell is paved with those. It’s time to take responsibility for the collateral damage that you wreak every time you take to your bully pulpit.

Have you met Sparrow, Suzanne? She’s an autistic advocate. One of the people whom you so easily dismiss, whose voices you have so stubbornly refused to include in the conversation about themselves. She was kind enough to donate her time and what I have no doubt was an immense amount of…

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Shared Glances

I really hate shared glances. Nothing makes me feel more despair than that. Wouldn’t it be nice if people did not judge?

I hate knowing that my family is critical of me. I find it especially depressing during the holidays, when I feel attending family gatherings or hosting family members is a chore rather than a joy. Every criticism is stuck in my head, and I don’t want any added to it. It seems inevitable.
My autistic son has a small meltdown, nothing I worry about, and I get the shared glances. Because it is always, always, assumed that he has trouble with transitions or denials because I am spoiling him. Not because he is not neurotypical and overloads easily.
My kids act like kids, they get loud or make mistakes or have trouble with ¨no¨, and it is because I am not parenting properly. They are expected to be quiet and obedient, robotic, by my family. They are expected to keep their hands in their pockets, to never be curious, never impulsive.
Maybe I am doing something wrong/different, because I want my kids to be interested in things and feel free to say how they feel, and I cannot see any long term issues with that. Impulsive, I could do without, but age and learning self regulation help with that.
Everything is a teachable moment to me. Everything to my family is a mommy fail.
I hate hearing all the bad things they say about anyone else of my blood, because of course then they are saying it about me, too. Never have I ever heard a bad thing said about any member of my stepfamily, until after divorce. They seem perfect, and in company with them at holidays it is in stark relief, because my father can see us all together and compare.

Shared glances when I am among friends is hard, too. It means there is some conversation, some observation that I wasn’t present for, that is being revisited in that glance. Something about me, and not good, either. I know I am odd, couldn’t you just spare me the embarrassment and keep your gaze somewhere else?

Shared glances when I am among strangers are the worst. It is a reminder that I cannot fit in. That I will probably never belong.

I don’t want to think like this. I spend a lot of time arguing with myself over this sort of negativity. But for a month or so after witnessing a shared glance, it consumes me and takes me back to childhood. I was one of those kids. The ones that were dressed cheap and sloppy and had greasy hair. The one you would tell to have a nice trip just before you stuck a foot out.

Then my daughter comes up while I am typing this and announces that it is time for a hug, that she is going to hug me and I am going to hug her. Then we hug, a big happy hug, with smiles and those content noises little kids make. When I let her go, she tells me it is my turn to hug her, and we share a happy glance first.

That makes everything better. That is really all I want, for my kids to feel supported and safe at home, happy in their own space. There is nothing else in this world that matters.

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Nebulizers and Fear

My son has a persistent cough. This kid is capable of springing lung infections in minutes, so I am understandably stressed. I got home with him nearly four hours ago. I sat him on his nebulizer immediately, after a dose of Mucinex. No dice, but I had prepared for that. I had put his brother in the bathtub at the same time, to steam up and warm up the bathroom a bit. When the nebulizer failed to calm his cough I put him in the shower, having taken his brother out already. It took another half hour, but the coughing did stop.
He was good for a few hours, got a bit hyper. That was albuterol. Tried to get him to bed. He tried to sleep, kept coughing. I had to wait for the four hour mark to put him back on the machine. I put him on it, in bed, as soon as the time came. I had already propped him into a sit, and he was very cooperative.
I have been wound up tight since I heard that cough this afternoon. I spent the intervals between checking on him picking up the kid clutter in the house to distract myself and still be productive. I have not been a pleasant mommy this evening. When I worry I get distracted and I get so focused that I don’t want to talk or play. I am sorry for the other kids, but they get the same thorough nursing when they are sick.
I waited a few minutes after the medicine was gone, and then hit him with children’s cough syrup when he was too tired to protest. He hates that stuff.
Now he is coughing slower, wetter, and it sounds like drainage. What is left for me to do? Well, I have to steam up the bathroom again and haul him in there, all tired and floppy, and force him to sit up on hard surfaces close to the bath while the shower runs. For at least fifteen and more would be better.
Here I go. Tomorrow is the doctor, I am sure.

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Autism, SPD, and Haircuts

My son let the hairdresser cut his hair with clippers today. This is HUGE. I have waited six years for this. There was one other time that he let the stylist finish off the edges with a clipper, but today he let her do his whole head.

His father did not want to pay for haircuts. He bought a clipper and would do my son’s head without a guard, since babyhood, with me begging for him to stop and put a guard on until he pushed me out the door and locked it against me. My son would scream and cry and end up with razor burn. Having SPD does not help any more than the trauma does. He hates the sensation, and the auditory dysfunction makes the buzzing sound intolerable to him.

I have to get his haircuts done in the morning, after a good night’s rest, on a second day off, like a Sunday. Which is how it was today. I want to find a formula that works, so I never have to see him panic in a barber chair again.

He knows how proud I am. It was his own choice, to get a fast cut and not the slow scissor cut that made him squirm in concern for his ears.

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Moving

We were on a waitlist for a few months for a larger apartment. We have twice as many people as rooms, and a larger place really seemed like the answer to numerous things. The town is where the children attend school and daycare, and close to everything. My name change went through, and plans to expand the family fell through. So getting one more bedroom is enough, at the right time, with just myself and three kids under the new name.

But the children. They lived in three places in a year, and we have not been here but eighteen months. I was terribly worried about how they would deal with the move. They are attached to one family in this town, that we will see as frequently as possible, anyway, as they are our dearest friends. I thought they would not want to go. Because they tell me quite frequently how much they love their ¨house¨. Maybe they just say it because they have lived in worse places, or maybe they feel affectionate towards it, I wasn’t sure.

I got the call on Monday that we were approved and I was in shock. I had given up on that place, they never verified with me that I had been added to the list and they did not return my calls. I had, a few hours before getting the news, called and added myself to another wait list and arranged to pick up an applicaton for yet a third. I thought it would take over a year.

Monday night I started complaining about the town we lived in, how far it was from school and store and daycare. The kids all agreed it would be more convenient to live in the town I was approved for, essentially I asked their permission, and got it, after the fact. I laid it thick on a few more days, to give it a week, and just announced that we were moving at the end of January. The reaction is positive and they know we have to pack, which is reassuring for the upcoming transition. If they get the mechanics and can participate, it should be easier, even for my Aspie.

I hate moving, truly. But I am grateful for how quickly I have been getting income qualifying housing in this area. I haven’t seen the place yet. I hope it is the sort of place I can stay in forever. That is what I want for them, that sort of stability.

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Your Rafter Keeps Poking My Eye Out with It’s Irrelevancy

No one said it better than this. This is what it is like.

Picking Up the Pieces

Dear “If I Was You, I would have:”

Since you have the benefit of having the story in its totality but none of the intimate personal experience with the abuse I endured and the snap decisions I made on a daily basis just to survive into the next twenty-four hours of destruction, your opinions, assumptions, suppositions, advice, and criticism are not welcome here.  I know you feel the choices in the moment should have been obvious to me in all my intelligence, but never for one moment forget that you have the benefit of something that, at the time when I really could have used it, I did not have.  I have drawn you a picture of the entire 1,551 days in such detail that there is nothing omitted.  I have withheld nothing from you as I brought you into my story and shared vulnerability that you were, as it turns…

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Asking About Their Father

In the car, out of nowhere, after a shopping excursion to spend his hard-saved allowance, my middle child asks me “When did our father ask you to marry him?¨.
I tell the truth, the exact day we decided to be together (we did not date) and then explained that we never did have an official ceremony, that his father never got to it.
He asks me what the weather is like that time of year. He asked me why we decided to be together. I told him because he was a good person, I was a good person, and I really loved him and his family. He asks if this is before his father became ill. ¨Of course¨ I tell him. I said ¨I loved your daddy more than anyone, and he was a heroic person when we met, but I would not have liked him if he had been mean (that was their choice of words, initially) when I first met him.¨ I told him that if being mean comes from being sick, it still doesn’t make it any easier to live with. He agreed, immediately, and did a little parody of his father screaming at us. Then he changed the subject, and started talking about his purchase.
Whoa.

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