Thursday, April 9, 2015

Clash of the Sensory Needs

While reading autism-related blogs/boards, I've come across a particular fantasy several times: AutismLand, a community where autistic people can just be themselves and not have to try to fit in, and everyone around will understand and not judge.

It's a lovely idea, but it has several major flaws. One is that autistic people, and those who love them, aren't automatically free of judgement of others. One is that not all autistic people have the same needs. And one is that even people with similar needs can clash horribly.

My house is a freakin' sensory nightmare of noise and smells and mess and chaos lately. I'm very lucky to have my own space... but it's not soundproofed. And I can't hide there all the time.

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


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.