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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:

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?

“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.

(picture from a rally in the UK)

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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Comment Preferences

  •  I am a speech therapist (13+ / 0-)

    who also happens to have had a child born with cleft palate, who needed lots of help.  I, too, have fought and never given up.  When told-it will just be difficult for him to ......  talk, eat, be social, read .... I said, "There is no excuse!" Because I knew the law and regulations of IDEA and ADA, I was able to be an advocate for my son.  He will be a senior in high school this year and is looking toward going to college with a degree in journalism.

    I can't tell you how many people told me, when he was young, about all the things he would not be able to do.  All the times I was told certain therapies could not happen.  I was persistent. I knew his rights and argued on his behalf.  I did not give up.

    I work with developmentally delayed children ages 3-5. Some of my little ones have physical disabilities, some autism, some Down's Syndrome, some CP, etc. etc.  I work with each parent to teach them their child's rights for education.  I teach them to not back down if told, "We can't do (fill in the blank) for your child."

    If people like your parents had given up on your brother, my kids would not have the law to help them today. I thank them a million times over.

    And I join with you in the fight that lies ahead. I am truly disappointed, but I am also mad as hell.  In PA, Tom Corbett is having a field day with cutting education. The law is still the law-no matter what they cut. My mission is to be sure parents are aware. Be sure parents know their child's rights.

    Peace, Hope, Faith, Love

    by mapamp on Fri Aug 05, 2011 at 06:40:10 AM PDT

  •  Republished to (6+ / 0-)

    Parenting on the Autism Spectrum.

    A little tender courage at that rare right instant, and things might well have turned out differently -- Ken Kesey

    by Frankenoid on Fri Aug 05, 2011 at 07:25:47 AM PDT

  •  Keep fighting! (4+ / 0-)
    Recommended by:
    mapamp, Renee, Shockwave, cv lurking gf

    My son was diagnosed with ASD just before he was two.  It was like being hit by a bus.  My wife and I definitely went through several stages (grief, anger, etc).  We actually had one pediatrician say "there's nothing you can do."  B.S.  My wife quit work to take care of him and have time for research and therapy.  He's been doing MUCH better after getting him on a few key supplements, changing his diet, and doing OT, PT, Speech Therapy and especially ABA.  We are not helpless against this disease - parents are far ahead of the 'standard' medical community at this point, and thank God for the knowledge gains of the last 10 years.  There is a lot of reason to hope.

    If you haven't done so already, check out groups like TACA-NOW.  Find a DAN (Defeat Autism Now) doctor.  And get your son into ABA if at all possible - he's made more speech gains after a few weeks of ABA than he had in months.

    My wife is my hero - he stays up until all hours of the morning, not only researching, but contacting our representatives at all levels regarding this epidemic.  I sincerely hope we can keep some level of treatment for kids before our teabagger governor deems Florida's Early Intervention program and related services "socialism."

    •  We were lucky (4+ / 0-)
      Recommended by:
      mapamp, Renee, Shockwave, cv lurking gf

      To have our son diagnosed early (about 2 years old) when he became pain-insensitive... insistent on self harming behaviors.  He's seen a counselor since he was 3, and we've managed to work with his school to have PT & Speech Therapy, and we worked to get him a full time para.

      I posted a link to my earlier blog on this, but I tried to lay some of that out there.

      Fortunately, to now, I've been very happy with our care and the doctors, therapists, psychiatrists and teachers.  Not as happy with school administrators or insurance companies and the like ;)


      Having Hope and using action to give people hope are different things. Make a difference for someone.

      by Chris Reeves on Fri Aug 05, 2011 at 08:38:10 AM PDT

      [ Parent ]

  •  So called Christians (4+ / 0-)
    Recommended by:
    CamillesDad1, Renee, kiwiheart, Shockwave

    It's sad that these so-called Christians make their first moves to hurt disabled kids.  

    Bunch of hypocrites who demand fake Christian values and then run from people that need Charity and Compassion.


  •  Our son is autistic-- high functioning-- and your (7+ / 0-)

    belief in your son is making me feel so proud of you, and connected to your struggle.  

    We didn't face the financial and other setbacks that you did in dealing with his issues, but we did have to fight.  I fought for our son every step of the way.  Dealing with teachers, caregivers, principals.  Advocating for his needs and going to IEP meetings prepared through having networked and asked questions and researched.  I knocked on doors and made countless phone calls trying to find service providers and therapists, programs, helpers, aides.  I researched games, approaches, theories.  

    All the time I spent doing this, I was not doing my work for my career.  Or rather, I neglected the part of my career that would get me promotions, raises, and respect.  As a result, I took a big hit in my career.  I let a lot of people down and developed a reputation as someone who sometimes wouldn't follow through "for personal reasons".  Well shit yeah--- my child is my most important "personal reason" in my life.  

    I don't regret any of the things I lost during the hardest years when he was throwing tantrums and knocking over furniture and hitting us and banging his head on the floor and hiding from people and freaking out and in desperate need of socialization, therapy and help.  I went out and found him the help he needed, demanded it from the schools, and gave him as much of myself as I could, because I believe in this kid.  As a result, he has improved 500% from where he was just two years ago (he is now 11 and was diagnosed just after he turned 5).  

    Seeing where he is now, makes me happier than most people ever could imagine.  But you have described exactly what motivated me and what fills my heart when I feel my belief in our son:  I see only possibilities for him, and have so much hope for him, and know that his fight is the best fight I could be waging while he needs help.

    This was a wonderful diary and I thank you for it.  God bless you and your family.  Hang in there.

    That's one more thing to add to my long list of small problems. --my son, age 10

    by concernedamerican on Fri Aug 05, 2011 at 11:51:19 AM PDT

    •  I know the feeling. (6+ / 0-)

      I didn't cover this here, but our struggle economic was just that we caught things at the wrong time; our son didn't take to medications we had tried as well as we thought, and a few years ago, due to an "experiment" a house fire claimed everything we had (thank god for insurance, and us waking up in the middle of the night to get out)

      Like you, we fought through the meetings and the school boards and teachers, paras, etc.  

      I'm just grateful we had resources to do it.   I'm more sick at my stomach over people with no resources to do it who are being absolutely destroyed economically.

      My wife gave up her work in her profession (which in a miracle, she went through her college years in Speech Therapy, which turned into a gigantic help)..

      But if you don't have resources, family.. it's hard as it is.. but the system is plowing under tons of people and creating a class that may find they've lost the one thing in the world that matters most: their family.

      Having Hope and using action to give people hope are different things. Make a difference for someone.

      by Chris Reeves on Fri Aug 05, 2011 at 12:00:04 PM PDT

      [ Parent ]

  •  Please know that there are plenty like me, (5+ / 0-)

    special education teachers, who relentlessly advocate for students with special needs. We are stymied by the administrators and the narrow-mindedness of those who have never spent enough time with anyone with any sort of disability to understand the depth and berth of their abilities.

    "There must be more to life than having everything" -Maurice Sendak

    by lilypew on Fri Aug 05, 2011 at 12:31:52 PM PDT

    •  I can't understate the greatness of some teachers (2+ / 0-)
      Recommended by:
      mapamp, cv lurking gf

      Our son had great teachers from the get go, and without them, I don't know where I would be.

      His issue with not really grasping pain was something that was a problem for us from the beginning.   When he was 4, he lept up into a ceiling fan at a relatives and required stitches.  At the hospital, he laughed hysterically, and mumbled his phrases (he often repeats the same phrases over and over) and the next day, we had Children's Protective Services .. and fortunately our Son's para, psychiatrist and teacher were at our house for our weekly conference.  I cannot tell you how easy that meeting went.

      But administration has been the absolute bane of my existence.  His third grade year he was in Special Education, a seperated classroom, which worked.  He posted the highest scores for Math & Science in the district.   But he couldn't handwrite, bathroom skills needed help, and he couldn't tolerate noises (DON'T EAT NEAR ME!!).  

      Despite objections by our psychiatrist and others, they mainstreamed him because of test scores.   When a violent outburst over his lack of ability to deal with a large classroom came about, we spent months dealing with the legal and court system, as the school decided that his agression "couldn't be handled" and a 10 year old they wanted to scores from was put into a cop car and charged with assault, a felony offense.

      He's at a different school now.  New medication.  But some of the teachers we had were some of the greatest people I have ever dealt with.   Some of the administration on the other hand could go leap in a lake.

      Having Hope and using action to give people hope are different things. Make a difference for someone.

      by Chris Reeves on Fri Aug 05, 2011 at 12:48:34 PM PDT

      [ Parent ]

  •  Beautiful, beautiful diary. I am the mom of (4+ / 0-)
    Recommended by:
    Renee, mapamp, kiwiheart, cv lurking gf

    3 sons, 2 are on the spectrum. While I tend to be timid and even fearful about most aspects of my life, nothing compares to the strength and passion I feel when I talk about how we can support and advocate for people of all ages with autism.

    Thank you for this!

  •  This may be a little OT, but (2+ / 0-)
    Recommended by:
    Renee, Troubadour

    I have a friend who frequently does work at the Los Alamos labs, and last time he was there he learned that the lab is experimenting with Autistic kids to solve problems.  Apparently they have recruited somewhere around 50 kids, some as young as 10, shipped them in.  I don't have any more details, but it is a reliable source, a respected scientist.

    The genuine fools are those who believe they are never foolish.

    by miss karen on Fri Aug 05, 2011 at 01:03:57 PM PDT

    •  Very odd (3+ / 0-)
      Recommended by:
      Shockwave, wa ma, cv lurking gf

      My father and stepmother had shared this story that I simply always found hard to believe. I have Asperger's, and my younger brother is quite a bit like me and I'm fairly certain he also has Asperger's (also known as high-functioning autism in some circles). My parents claim that during a round of standardized testing in grade school (I was no longer living at home), he was found to be extremely gifted; that does not surprise me.

      But then they said that some people who said they were from the government came and asked them to agree to more testing, including IQ testing, so they did.

      After the second round of tests, the government officials supposedly said they wanted to take my 10-year-old brother and put him in some sort of special boarding school for children highly gifted at problem-solving, who would be the "future leaders of tomorrow."

      They said there was no way they were letting my brother be taken away and sent somewhere.

      I always thought the story sounded far-fetched, but it's odd how much it jives with what you've just mentioned.

      We Won't Let Republicans Replace Medicare with GOP Vouchercare!

      by CatM on Fri Aug 05, 2011 at 05:18:35 PM PDT

      [ Parent ]

  •  Thanks for your heartfelt diary. (3+ / 0-)
    Recommended by:
    mapamp, angstall, cv lurking gf

    I've worked in the developmental disability field for over thirty years and can't remember a time as bad as this for getting vital services.  I live in a state (IL) with over 20,000 children and adults on a waiting list.  Believe me, rationed care has been going on for a long time!

    A petty criminal is someone with predatory instincts but insufficient capital to form a corporation.

    by stlsophos on Fri Aug 05, 2011 at 02:00:12 PM PDT

    •  You're right. (2+ / 0-)
      Recommended by:
      mapamp, cv lurking gf

      Sometimes when we talk "Cuts" and "trimbacks" it puts a very non-human face on an issue.  The reality is, the people who get hurt most are the ones who need are help most.  

      Having Hope and using action to give people hope are different things. Make a difference for someone.

      by Chris Reeves on Fri Aug 05, 2011 at 05:05:41 PM PDT

      [ Parent ]

  •  Brava (2+ / 0-)
    Recommended by:
    mapamp, cv lurking gf

    Very inspiring at a time when we all could use a boost.

  •  I have Asperger's. (1+ / 0-)
    Recommended by:
    jeff in nyc

    It's never been bad enough to need the level of support you've had to give for your son's autism, and I can't possibly know what it's like to deal with a spectrum disorder from the outside, but I know exactly where you're getting the sensibility that giving up is not an option.  My second-to-most-recent diary tried to make exactly this point, but it was not well-received due to (what else?) miscommunication.  

    But I'm acquainted with grim determination because my disorder wasn't even diagnosed until adulthood - and that was only because I finally did the research myself and contacted experts for consultation.  So my life has largely been countless cycles of having expectations imposed on me I wasn't capable of meeting, blaming myself (and being blamed by others) for it, making extreme sacrifices to meet those expectations in unsustainable Pyrrhic victories, and knowing nothing even vaguely resembling happiness or joy.  That's changed now.

    Relentlessness is now an indelible part of my character, but I've learned to have compassion for the world and for myself rather than treating aspirations as burdens to be dragged in eternal toil like the rock of Sisyphus.  Hope is to be cultivated, nurtured, grown and defended when attacked, but also allowed to evolve on its own terms rather than forced into rigid boxes that betray its spirit and make it vulnerable to despair.  There is no reason we cannot have a progressive-led Congress in 2012 that doesn't merely let the Bush tax cuts for the wealthy expire, but passes large increases.  No reason, if we simply engage our diligence, our intelligence, and our effort.  But at the same time, failure is never a limitation on future options.  Every single moment carries the same potential.  Recognizing that is the very meaning of freedom.

    The conundrum of stable democracy: Reform requires the consent of the corrupt.

    by Troubadour on Fri Aug 05, 2011 at 09:11:50 PM PDT

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