Friday, September 6, 2013

Many of Us Have Walked in Her Shoes, but We've Taken Another Path

As the single mother of 3 Autistic children, I am outraged over the justification of the attempted murder of a child with autism. No, it is NOT "understandable." Whatever the challenges that come along as part & parcel of our lives with Autism, they are not our children's fault. They did not choose their neurology, their challenges, their parents or create the systems we must navigate. Yet our blame falls on them, these innocent vulnerable lives, & they are being sentenced to death for the crime of being Autistic. For having the audacity to require our care & advocacy rather than being convenient accessories in the idyllic lives we imagined we'd have. 

Don't tell me how hard it is. I know. I've lived through triple the phone calls, school meetings, insurance company battles, paperwork, therapy & medical appointments & triple the sleepless nights & meltdowns. And YES it IS harder. Let me tell you about the day I had a 3 hour appointment at the Social Security office then went to the pharmacy to discover the insurance company was denying coverage of my children's medications, & while trying to sort it out was interrupted by two consecutive phone calls from the elementary school saying one, then the other of my younger kids was melting down, clicked over to call waiting from the high school saying my oldest was having a meltdown & as I hurriedly promised to pick one after another of my children up I got another call waiting from the hospital--they were taking my (then) husband into emergency surgery. I stood in the middle of the store aisle & burst into tears because I had no idea what to do next, who to help first. You know what? That wasn't even my WORST day. It's not even in the top ten. For the record, my BEST day was when the surgeon told me my son survived brain surgery & that he thought he got all of the tumor. 

Don't tell me that somehow I must be "stronger" than others, than that mom--than you. I didn't miraculously receive superpowers along with my 3 children's diagnoses. I have a lot more experience now, but my lessons were every bit as hard won as anyone else's. It's probably true that I'm better equipped than anyone else to meet my children's daily needs; even most challenges are familiar & well-navigated after so many years. It's just my reality. Nevertheless, it wears on me, grinding me down day after day until I hit a wall of exhaustion. And you'd think by now I could take the disappointments, the blows, unexpected crises in stride, but I don't. I still FEEL them. I cry, I get angry, I worry. I still hurt. I'm only a human being. A fallible, tired, middle-aged mom just doing the best I can. 

Don't tell me that I must never have known dark moments--days--weeks--years & therefore "but for the grace of God go I." Because those of you who KNOW me, really know me, who have been there could tell you that's not true. I've been knocked down & gotten up a over & over again. But sometimes I've gotten knocked down...& not been able to get back up by myself. Not without help. And THAT is the one of the BIGGEST difference between those who lay down & never get up & those who DO. We get help. We recognize, "I am not okay & I need HELP." Because NONE OF THIS IS OUR CHILDREN'S FAULT. None. If for a moment we forget that, then we don't walk, we must RUN for help. 

I'm not saying it's easy. The effort to FIND help can seem too much when you're too tired physically & emotionally to keep your eyes open. And it's rarely exactly what you need at the exact moment you need it. No one is going to come along, wave a magic wand & make our lives-POOF-easier. But if you can talk or write you can be heard, get support for yourself & ideas for helping your child. There are so many more of us now than when we began our Autism journey & we *get* it. If you have access to a phone, you can call a crises hotline. If you have access to the internet you are never completely alone. If you have access to transportation there are support groups. When you feel yourself sliding down, down, down you grab onto a lifesaver & hang on. Don't hang onto your child & pull them under with you. And if you know your friend in "real life" or online is "crying or help", who exactly do you think they are crying for help from? Sometimes it's YOU. 

To all those parents who say, "This mom is one of our own. She's part of our community. Have empathy for her " I ask you, if you knew she was crying for help, where were you then? In an interview prior to this incident I read that she commented she wanted witnesses in case she didn't survive this. That didn't ring any alarm bells? Cause you to recognize a crisis & take action? Now those who claim this mom as their own say "It's understandable" rather than ask what they themselves might have done to help prevent this. Instead they continue to put the blame on Issy, a distressed child who was vilified online by her mother & then nearly murdered by her. What of empathy for HER? 

As the community rushes to defend the parents who attempt or successfully murder their children, what message does that convey to our own children about their value to society? If you want to know--ask an Autistic adult because they have wisdom to share. Adults, by the way who are being battered by angry parents right now for speaking out. They are being accused of lacking empathy & told they cannot understand because they have Autism. How about we as parents try a little perspective-taking, consider how hurtful that is & listen to them? I would also like you to consider, what message are we sending to society itself as they watch us kill OUR OWN community members & provide justification for it? If we as mothers, as Autism community members are not willing to say it is UNEQUIVOCALLY WRONG to murder OUR children we might as well straight out say, "Don't bother accepting individuals with Autism--even WE don't think they're worth it." 

To individuals with Autism, I'm so very sorry. I am ashamed of how you've been treated by members of our own community. To my own children: Tom (21) Kito (18) & Kaede (13) I love & accept you & you are my reason FOR living. 

Kristi Sakai 

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