themcglynn.com

05 Aug

My Autistic Hero, and Why We Fight to Win

The O’Leary: Brownback is one of the worst.

by tmservo433

 Almost 18 months ago, I wrote a diary I had suffered with for months.   Our oldest son, diagnosed with Autism, had struggled drastically that year, with rage, self harming, anger and mood swings dominating our life.   18 Months ago, after doctors, weekend stays and treatment, we were finally pushed into needing to seek institutional care for a while to manage his treatment.  

This week, we celebrated a birthday.   We celebrated a victory.   We’ve tasted defeat and setbacks, there is no doubt.   But this week I was reminded most Why I Fight – and why we all fight to win.

About 18 months ago, I had hit a real low point.   The realities of how our son’s diagnosis had really made a change in our life, and at times it really stung.  I wrote a diary that I still stand by and look back on and think of what it was like in that moment Original Entry.  But at a Birthday this week, I watched my son who is home with us again get pumped up about school, cheer for giftcards for gifts, and we celebrated as a family.

But just because we celebrate today doesn’t mean that we haven’t learned lessons.  It doesn’t mean that everything went perfectly, it doesn’t mean that we didn’t have setbacks.  There are joys and sorrows.  I promised someone privately I’d update and say how things went, and I will – but I also want to tell you, when you feel the lack of desire, a belief that the fighting is too hard, I want to take a few minutes and remind you why it is as important now as it has ever been to fight.

I grew up a kid in a household that had what could best be said real diversity.   A younger brother was born with a serious physical disability that impaired his ability to get around.  It also meant when he was diagnosed as a young child, we were all told that his life would be short.   It was a blow to my parents that would have crushed quite a few people.   The deformity was severe and misunderstood.   Because of it, I was present for my first run in with real, open opposition.  As he grew, still confined to a wheelchair and with serious dwarfism, schools refused to allow him in.  But rather then give up, with nothing but the shirt on their backs, my parents moved our family to seek change and schools that wouldn’t lock my brother out.

And from that, I learned about advocacy.   I learned that there are causes that you fight for – and I learned that fighting hard is a duty to yourself and to your family and community.   I was 10 years old when we were told that there was “no way” he was worth educating.

We went back home, and with a look in her eye that said it all, my mother and father told us: if we have to sell everything we own, if we give up everything we have this is an injustice they would not allow to happen.     And the fight was on.

I have to tell you – it ended well.  While they were forced to homeschool my brother for several years, the school was forced into paying for equipment, books and supplies for his first few years.   In the 8th grade, he was the representative for the spelling bee and math olympics.  Today, he is working through multiple masters degrees and guest lectures at universities.

How did this happen?

It happened because people believed.   Because despite all of the opposition, they fought for what they believed in.    There were plenty of disappointments along the way, but there were real successes as well.   I was told once: being disappointed means that you believe in a cause and you feel let down.   Being disappointed means you had hope of something better.   Being disappointed isn’t a sin.   It’s promise.  It means you know more is possible – and you know it’s possible with the people you have.  If you aren’t disappointed, it means you’ve given up or you think that your options don’t exist.

How far could a poor family go in making their case?   I sat at a dinner table with a senator and watched two families of disabled children make a case to a powerful senator who told them that it was important to him to do the right thing.   And I listened as phone calls were made, and four senators, 2 republicans and 2 democrats got on the phone and said: I believe in this.

Two years later, I was there when a package came to the house a FedEx envelope a letter and a promise.   In that envelope was one of the first drafts of what became The Americans With Disabilities Act.

We had a family meeting, and with tears in her eyes, we were told that thousands and thousands of people had worked on this.  And the fact that so many had worked tirelessly made it possible.  All of the children in our family were then told: Do not ever quit on a fight for the right thing.   Fight with all your heart, everything you have – because win or lose, what you do is as much about the kind of person you are as the kind of person your opposition is.

I watched as schools – at that point high schools and colleges changed to allow admission.  And accessibility came to my brother.

So, when the fight came to my son, I knew that how I fought, and my willingness to fight would say as much about me as it did about those who might oppose what I believe.

So what is my fight?   In the last two years, I have tapped all of our resources.   We barely escaped what could have been bankruptcy.    We’ve fought with health care and community services.    Despite institutional care in order to prevent serious self-harming behavior, our state basically cut us out of medicaid options, and has forced us to repeatedly re-apply.. Which shouldn’t be shocking considering this:

http://www.khi.org/…

TOPEKA — Gov. Sam Brownback has proposed cutting the budget for community mental health centers by an additional $17 million. “This is absolutely devastating,” said Mike Hammond, executive director at the Association of Community Mental Health Centers of Kansas.

In a budget memo late Wednesday afternoon, Brownback noted that his proposed reduction in Medicaid funding for the centers, “reflected a new, lower estimate for expenditures in the Prepaid Ambulatory Health Plan.”

That plan is a managed care program run by Kansas Health Solutions, which is governed by a 15-member board, eight of whom have ties to the state’s 27 mental health centers.

In January, Brownback proposed eliminating a $10.2 million state grant that mental health centers used to cover the costs of caring for the uninsured.According to a report from the Legislative Research Department, that cut would result in more than 2,300 individuals being denied services.

Brownback also proposed dropping Family Centered System of Care, a $5 million grant that centers used pay for services for families with mentally ill children.

In the end, this year in my state, we lost a major fight.  We lost the kind of fight I can’t afford to lose.   But more importantly, we lost the kind of fight the country cannot afford to lose.

We lost a fight in the battle of compassion.   We lost a fight where we ask every person: “Whatever You Do For the Least of My Brothers..”    We lost a fight for the soul of everything we believe in.

And I was DISAPPOINTED.    But I was disappointed not because I give up, I was disappointed because I know we can do better.  I was disappointed because there are thousands of issues like this one that don’t make the headlines and don’t cause enough of a fight.  I was disappointed that I didn’t fight harder.

I want to say this now: part of why I am disappointed is because the message is too easily swept off the pages.    We have had repeated diaries about how redistricting has setup completely “safe” districts; districts where House of Reps members will go unchallenged because it’s a solid (R) or a solid (D).  I’m disappointed because not enough people get the message.

But being disappointed doesn’t mean I’m not prepared to fight.   It doesn’t mean that I’m giving up.   And what it definitely doesn’t mean is that my disappointment means surrender.  

My disappointment means RESOLVE.   My disappointments mean that I will be the squeaky wheel.   My disappointment means that I will ask those who represent me to do more.  My disappointment means that when I have a chance, I will ask people to look into the faces and hearts of small children who are being disadvantaged and I will ask them:  IS THIS AMERICA?   Is this the country you believe in?  

http://www.thekansan.com/…


“The long-term effects of these funding reductions will likely be greater need for inpatient care, more crisis and emergency situations, an increase in suicides, more episodes of violence, added strain on fragile families, increased involvement with law enforcement and the judicial system, and compromised patient and community safety,”

I will be reminded by the fight that my parents put up.  The belief they put into a son that others gave up on.  I will remember it took them 15 years to convince people they were wrong.   And by God, if my parents were willing to fight, I will remind myself that the only way I can be ashamed is if I am unwilling to fight as hard.  

There is no shame in ever saying: For the love of my family and my country, I cannot be deterred.   For the love of my friends and those I believe in, I cannot surrender.  If there is only one fight in my life, I have to be willing to put it all out there to at least spread the word that the America I believe in exists in EVERY CONGRESSIONAL DISTRICT IN AMERICA.  I cannot say to myself: this are places in America that aren’t worth fighting for.   There is a place in my country that doesn’t matter because we can’t win.  Every person in emergency care; every child who finds that suicide is an option because mental health isn’t available, every family broken up because debt crushes them under… What can I do to help?  Can I help every one of them?  No.  Can I make a major change everywhere?  No.   But I can’t excuse myself if I don’t TRY.  

I realize that other diarists were flamed for talking about how to donate.   Well, let me say this:   You find me a democrat running in a safe Republican district who may be Don Quixote but is willing to get out there and spread the message, to at least take the personal risk and speak for what they believe and I will show you someone I believe in.

I am not a corporate sponsor.  I cannot write a huge check.   I once joked that a few tanks of gas and a copy machine would run a campaign in districts in Kansas, Oklahoma and Nebraska that are almost unchallenged.   I will say this:   despite all the political games adding the math of who wins and who loses, I will tell you that I have NEVER felt a loss if I backed a candidate who was willing to speak the truth.   I don’t give a damn if they went down with 10% of the vote in a district.

EVERY DISTRICT IN AMERICA Deserves the truth.  I don’t give a damn how safe a district is, there is someone there who is desperate to not be taken for granted.  

I know the Presidential race means that several states get written off early.  I know my state (Kansas) is unfortunately one of them.   But does that mean that I won’t root for someone in every district, in every state race I will ask for people to not disappoint me.

Kos lately has been filled with a lot of attacks.  A lot of “We hate the president” “We hate the senate”.  I say to you: if that’s what you believe then two things are true:

(1) You are disappointed.  And the reason you are disappointed is because these are people you expect more of.  You can demand more of them.  Do it.  You can’t be disappointed with the opposition because this is what you would expect.

(2) If you really feel as though your democratic senator or HR is really not listening, then ask of them to do more.   Or hell, tell them if they have given up on the country you believe in them, we need to find someone who hasn’t given up.

2012 is coming up.   We have numerous issues that all of us here care about.   Environment.  War.  Kids.  All politics in the end comes home.  It impacts all of us in one way or another in a very personal way.   If you give up, then you cannot complain.

But damnit, I can’t give up.   I am all in.   I may be disappointed – but disappointed doesn’t mean I have a right to quit.   And damnit, for me it means I can’t excuse any of you here who quit.   It means if you believe in this, then I expect a fight.  I will be disappointed by our politicians frequently.  I will post my disappointment.   But I will ask daily: DO BETTER.   I will ask them to talk to all of us who need them to do better.

This is what I am fighting for.

And the word surrender cannot be part of my vocabulary.    I want to say to every Kos person here who has posted that they are disappointed: I’m glad you’re disappointed… I want your disappointment to fuel you to fight to make people listen to you.   Because whatever your issue is, whatever you are fighting for – there is no shame in being disappointed.  But there is a lot of shame & regret if you quit when you knew something was wrong and you gave up.  

I can’t live with that kind of regret.   I will ask every person on Kos – put aside your disappointment.   Are you willing to fight to do what is right?  And if you are, I tell you: be disappointed today, and by God, fight with me and others to help change things tomorrow.   That’s all anyone can ask.  And win or lose, you cannot be ashamed to fight for the right thing.   Ever.

Originally posted to tmservo433 on Fri Aug 05, 2011 at 06:00 AM PDT.

Also republished by Parenting on the Autism Spectrum and Community Spotlight.

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