Wednesday, March 25, 2015

I have a Doppledeaner! Or a Deanleganger!

This post... it's me. Almost every bit of it. I'm going to steal her phrase for a tagline. (and by steal I mean, ask for permission to use.)


Monday, March 2, 2015

In Which I Mix Metaphors

I had a huge public meltdown the other day and am still shocked and embarrassed and all that good stuff. I saw my therapist today, and she put a weighted blanket on me and talked about my struggling nervous system and expressed sympathy for me having to go through that.

It made me feel so bad for every time I've been impatient or angry with my son. How often does he get unconditional support? Well, more often than some, I'm sure, because we really do try... but not often enough. He should never be made to feel bad about something his neurology/nervous system is doing to him.

And I realize now, that makes it so much worse. Part of what made me melt down was that there were suddenly landmines everywhere in a place that should have been safe... and none of the other people there, my friends and family, realized it. It's like being squeezed by a monster, and only able to squeak out a tiny call for help that no one understands, and when the monster realizes how helpless I am, he squeezes even harder.

Saturday, February 28, 2015

Just As It Should Be

A little over a year ago, I started blogging about autism by writing about my son's uncomfortable reaction to an Autism Speaks fundraiser at Toys R Us.

Today, my son is working on a youtube video about how autistic people are treated in the media.

He's speaking for himself now.

Thursday, October 23, 2014

Link

I think this post in the #IAmNotKellyStapleton flashblog is one that gets beyond anger to make valid points: First Do No Harm
"How am I not Kelli Stapleton? When I wanted to engage Sophie I did the opposite. We include Sophie in everything we do as a family. We avoid separating our kids during family time without a very good reason. We constantly brainstorm which activities would be most suitable to all our family members, who are all of different ages, ability levels and at varying developmental stages. It is difficult sometimes but not impossible. Why do we "bother"? Because we are a family. We all matter.

How am I not Kelli Stapleton? Because when I realized that Sophie's autism was "here to stay" I knew that I had a choice to make. I could mourn, cry and pine for the child I thought I wanted. Or I could embrace the child I was given and learn to be the kind of parent she needed."


Wednesday, October 15, 2014

A Good Day for the Library Sale

Something about my husband being absent brings out the cleaner/organizer in both me and my son. He's been cleaning out his books, and asked for my help making decisions about the massive collection I had amassed for him.

The experience was fraught with symbolism. So many books that I l had loved, and thought my child might love. And that I have to recognize now he has no interest in, and likely never will.

The floor of my office is now covered with my out-grown dreams.



Yet another reminder that no matter our similarities, he is himself.

The Mythical "Services"

I've written before about how some services can be more harmful than helpful. That's probably no surprise if you've read about shock "treatment" and some of the uglier aspects of ABA. (I should mention that the ABA therapy we experienced was not generally cruel, was helpful in some regards, and was even sometimes enjoyable for my son. The problem was that overall it was an extremely poor fit for his personality, and the practitioners were not flexible enough to adjust. He's currently in a very different form of ABA program with very different goals -- basically it's ABA mainly in the recordkeeping and that the Regional Center will pay for it! --  and loves it.)

But what's on my mind right now is the idea that "services" are the Holy Grail for parents with disabled children.

I'm not discounting the very real frustration of parents or disabled adults who can't get the services they need from the agencies that are supposed to help them. That's wrong, and it sucks, and it needs to change.


But I'm very aware this morning, not for the first time, that services aren't a magic bullet. We get respite services, 24 hours a month. And we rarely use them all because we can't find a provider who can accomodate our needs. 

Yesterday was... bad. My husband has been away on a business trip, and I'm thoroughly sleep-deprived. Of course my son is stressed out too because his father is away. Almost everything you can imagine went wrong and by the end of the evening, I was completely out of spoons.

Thankfully, I talked with my husband and he had some suggestions for what I needed to do, that I was too exhausted to think of for myself. This morning I feel human again. I'm lucky to have had that long distance support. But it would have been even more awesome to have some hands-on support this week. Services that I theoretically have, that are already paid for... and yet I can't get.

Monday, October 13, 2014

Why I Can't Get Behind #IAmNotKelliStapleton

The autistic community has been making an awe-inspiring response to the attempted murder of Issy Stapleton by her mother, Kelli Stapleton.  Let me start off by saying I think this is an amazing and sorely needed response. The idea that parents who kill their disabled children should be pitied rather than censured is by far the dominant narrative in American society, and it's a very dangerous one on many levels.

But... I'm uncomfortable with some of the narrative that's replacing it, especially on the twitter hastag #IAmNotKelliStapleton. What I'm seeing there that bothers me:

1) An emphasis on the mystique of the loving, perfect mother.
2) Disdain for Kelli Stapleton as a woman and a blogger.
3) Disregard for the reality of mental illness.

Let me take these points one by one.

1) Most mothers aren't perfect. Most mothers aren't always loving, patient, and understanding. And yes, thank God, most mothers don't try to kill their children. But having an idealized image of motherhood to live up to is one of the biggest stressors for mothers. When I was a new mom, suffering from bad post-partum depression and feeling like an utter failure all around, I heard about a woman who committed suicide because she couldn't breastfeed. And while completely seeing the illogic of her action, I also understood how she could get to that place. That's how crazy it can be.

I love my child more than anything in this world. But I'm not a perfect parent. I'm not always loving, I'm not always patient, I'm not always accepting. And I have struggled and suffered from my own perceived failings as a parents since his birth. One of the most helpful concepts for me has been that every parent can only do as much as they can do. I can't be SuperAutismMom and that's okay. I'm his mom and we love each other, so I do the best I can. Sometimes it's not good enough. That's where we teach that people aren't perfect, and when we make mistakes we should accept responsibility, make amends, and move on.

This would all probably be equally true if my son were neurotypical. My own neurology is a challenge for me, one that parenting has significantly exasperated. I don't know if Kelli Stapleton had any of what are sometimes called shadow traits, but I wouldn't be surprised. Many of us do.

2) I absolutely agree that Kelli Stapleton disregarded her daughter's privacy with her blogging. This is something I struggle with myself, because I have so few outlets for self-expression around this. One of the reasons I rarely blog here is the constant tightrope walking of, "can I say this without intruding too much on my child's privacy?" Usually the answer is no. Sometimes perhaps the answer should be no and I do it anyway, because I need the outlet so much. Like right now.

Perhaps the privacy issue just never occurred to Stapleton. I talked about my son all over the Internet for years before I wised up. I think she was wrong and misguided, but I don't think her blogging proves evil intent and hatred for her daughter, as some claim. And I see blatant sexism in some of what's been said about her -- tying in with what a good mother does or doesn't do.

3) One thing that I never seem to see mentioned in this story is the fact that Stapleton also attempted to kill herself. That to me is a sign of someone suffering through severe mental issues, rather than someone who is merely selfish or cruel. It does not excuse her, but yes, I do feel some pity for her.  My pity is not as someone who also has an autistic child, but as someone who's suffered from depression and other mental illnesses. It is literally a mind-altered state and it is not easy to "fix."

When I see people write about how no matter how hard their lives were, they never thought of hurting their children, I don't know what to think. Bravo? Congratulations on never having been that fucked up? Can you tell me what secret sauce you use? It isn't a sign of virtue -- it's a sign of sanity.

Let's keep on changing the narrative. There is no excuse for hurting your disabled child.  The victim should not be the one blamed.  We have to keep saying this. But we can say it without perpetuating harmful ideas about women, motherhood, and mental illness.