Day after the election thoughts

Okay, the presidential election didn't go the way I would have preferred.  However, I am finding this morning I can't muster up too much emotion.  That's because I don't think anyone in a position of power has any idea what life is like for people like Janey, and the families that love people like Janey.

Why is this?  Quite simply, because we can't run for office.  We CAN, legally, but who would have the time?  When would someone raising a child with significant special needs ever have the time to launch a campaign?  Who would watch our kids while we were out there pounding the pavement?  Who would be changing the pull-ups, fixing the meals they will eat, taking care of our pre-teens and teens and adults that need the same level of care as a toddler?  And I hope I'll be forgiven for saying that Janey will never be able to run for office herself. That is not at all to say there are those with autism that might be able to run a political campaign, but those are not the people with the kind of needs I'm talking about here.

The problem is we don't need rhetoric.  We don't need philosophies.  We need help.  We need respite.  We need housing.  We need education.  We need recreational opportunities.  We need health care.  We need adult day programs.  We need equipment.  We don't need "awareness".  We need HELP.

I wish anyone running for high office would spend a day with Janey, a day in her world and ours, or a day with any of the wonderful families I've met on this journey.  I wish they could see how hard underfunded public schools work to educate her.  I wish they could see what it's like to care for her day after day, week after week, month after month, year after year, without any respite besides the school.  I wish they could understand what it's like to be up all night with a child who is crying and can't tell you why.  I wish they had spent time as a "boarder" in a hospital waiting for a seat at a psychiatric ward for their child.  I wish they knew what it was like to wake in the night, terrified, thinking about my health, not for myself but because I don't want Janey ever to be without parents.  

I'm a one issue voter.  I would love to have the luxury to think of it all in a theoretical way, to debate the philosophy of it all.  But I don't.  Tell me you are going to put money into direct services for the disabled, and you have my vote.  People on high seem not to understand why many just don't vote, but I get that, more than I ever would have before Janey.  Why vote, I wonder sometimes?  It doesn't seem to matter who gets elected.  I was furious that Trump mocked the disabled, but then again, Obama mocked Special Olympics.  I might have preferred that Hillary won, but if she had, I very much doubt my life would have changed much over the next four years.

The truly voiceless are people like Janey.  I see a lot of people on Facebook talking about how they are going to explain this election to their children.  Janey didn't know there was an election. She doesn't know what an election is.  No-one is courting her vote, or future vote.  She doesn't know who Trump is, or Hillary, or Obama.  But more than almost anyone, she's at the mercy of those in power.  I'm not a prayer, usually, but God help her.

Five years ago, but it could be today

Just now, I read the blog post I'd written about Janey five years ago, The Patience of Job.  It wasn't an especially mind-blowing post, or one about anything major.  It was about how much patience it took to get through one morning with Janey, one where she woke up at 1 am and I had to get through until school started, which at the school she went to then was about nine

Janey five years ago

.  I was curious how other years had been around this week of the year, as this was the week that two years ago Janey wound up at the psychiatric hospital.

What struck me most about what I read was how very similar to today it seems.  Janey's speech, her interest, her behaviors...so little has changed.  She still asks for the same things, with minor variation.  She asked for baths then, now it's showers, she was more into Kipper and Barney then, which she still does watch, but more often Scooby Doo or Courage the Cowardly Dog.  She still constantly asks to snuggle on the bed.  She no longer asks for bottles (babas), which even then really meant just milk in a glass, but she still asks for cheese and cabbage a lot.  Her sleep is better than then, but there are still sleepless nights now and again.

Janey's lack of progress in many areas is one of the things that has been getting to me lately.  Speech is the biggest area in which she, if anything, has regressed a little.  She talks pretty much exactly like she did five years ago.  What has been hitting me all the time lately is that she speaks far, far less than she did ten years ago, when she was two.

Over the years, I haven't thought about Janey's big regression that much.  Mostly, that is because I can't bear to.  I have consciously put it out of my mind.  I don't know why it's sneaking back into my mind lately.  But until about Janey's third birthday, she talked a lot.  Her speech had some oddities, but it was good, even very good, for a two year old.  She was followed closely by Early Intervention, and she never had speech therapy---I even remember them joking about how little needed it would be.  It bothers me some how little I can even remember of that fluent speech.  It would jar my memory to watch the few videos we made of her, but I can't do that.  I have tried, maybe twice, and simply fallen apart and turned them off.  But I know she spoke well, well enough to tattle on Freddy for showing her a scary Sesame Street parody "on the internet", well enough to talk non-stop one day about how much she wanted to go to the playground, as I remember timing it sitting here by the computer and noting she had talked for five minutes non-stop.  Enough to tell a friend's daughter that they would be "best friends forever"  And I have to stop remembering now, because I'm crying.

Most of the time, I don't get caught up in "why".  It's useless.  But something has hit me lately that I am thinking "why" a lot.  Why hasn't Janey progressed, when so many kids with autism do?  Why did she regress in the first place?  What happened?  WHY?

I'm not going to talk politics here, although of course tomorrow is Election Day.  It's been a depressing election season, and that hasn't helped my gloomy feelings.  But whoever wins, at whatever political level, I wish they could meet Janey.   It is ironic that people like her are the least able to speak out about what they need and want from government, but are perhaps the most affected by the whims of government.  I am terrified of my own aging, because I am terrified of a world where Janey doesn't have parents to protect her.  I'll close with a picture I took of Mayor Thomas Menino's gravestone.  He was a politician of the best kind, and the quote on the stone is something I wish all politicians took to heart.