The HATERS

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Almost daily, I receive messages or posts from family members alerting me to the hatred that is being transmitted over the Internet.  The ‘Call to Action’ messages I receive break my heart because I understand how hurtful the words can be. We love our children and we want to protect them from being victimized by discrimination and/or hate crimes.  Many of our children/adult-children lack the ability to report crimes committed against them; many lack the ability to speak.  Even when crimes are reported, the number of prosecutions/convictions is significantly lower than the general population.  It is often difficult to prosecute when the victim cannot testify.

Our fears are real and we have no method to escape them.  For me, I try to avoid reality.  I am unable to read the horrific stories of abuse committed upon our loved ones.  When I am confronted with these stories, it takes me a very long time to recover from the images.  I truly view all people with disabilities as my family members.  While I don’t condone violence, I don’t now how parents recover without becoming criminals themselves.  Clearly, a jury of their peers (parents and loved ones) would acquit their actions – we understand the strength of unconditional love and trust.

The trust that is involved in being able to handover your non-verbal child/adult-child to another person is unlike any other.  While they are often as fragile as an infant, they lack the cuteness. Unless you know them, they can be annoying.  Over time, family members become immune to the vocalizations, repetitive behaviors, and quirks our kids exhibit.  Our normal is a very different world. Our tolerance is significantly higher and our LOVE is unmatched and unconditional.  Few can meet our standards, even when we set the bar low.

Overall, society doesn’t value our children the way we do.  Judgments and assumptions of our families flow freely and often without a filter.  We live in a time where it is still socially acceptable to exhibit feelings of hatred and discrimination toward people with disabilities.  We are a minority group and we don’t have a strong voice, making us an easy target.

I’ve experienced the shift myself, as Mike grew older bigger, and his cuteness wore off.  Mike now looks disabled and people no longer question my parenting.  While I don’t receive as much judgment, there is an uncomfortable awareness that some people display. Rarely do people seek him out to engage him or even to offer a smile – most simply avert their eyes.

In all honesty, I don’t entirely blame society for this.  There is an uncomfortable bubble of politeness that most people respect.  At times, I have put this bubble around Mike myself.  It can be exhausting dealing with the looks, even when they’re supportive and kind.

All this said, we are incapable of changing the world we live in.  We are a minority group.   We are open to discrimination and hatred that is based simply on our very existence.  Yet, we are a minority group, unlike no other.  Our members are often helpless and mute. We must rely upon a society that is often, at best, simply uncomfortable with our very existence.

How do we ever change the heart of a person who hates us without justification?  The answer is simple, we can’t and we shouldn’t waste out time trying.  We must focus on changing the discrimination that we face in our world.  I am far more disturbed by ONE incompetent ESE (Exceptional Student Education) employee than I am by THOUSANDS of anonymous people of the Internet.  They have no real power or purpose.

My Internet blogging software provides me the web URL of people who click on my blog.  There are people reading these words who do not have family members with disabilities.  They are here to rejoice in the challenges my family faces.  The ONE time I explored these links, I was outraged and ready to mount a war.  Then it occurred to me, there is not ANYTHING that I can say or do to a person who is celebrating MY life struggles.  THEIR life, evidenced by their very existence on my blog has already punished them for ME.

So, me dear friends, blinders on and stay focused on the real fights!

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The Day Alec Baldwin’s Brother Turned Me Into A Liberal

I have always been socially liberal but a huge supporter of school vouchers and controlled government.  I am a Florida resident; Mike was diagnosed under Governor Lawton Chiles and was basically offered no services to treat his autism.  I supported Governor Jeb Bush and applauded the changes he implemented for Florida residents with disabilities.  I’ve lobbied for people with autism on both sides of the isle, both state and federal.

I was honored to have Senator Hillary Clinton take the time to speak with my daughter about having a sibling with autism, and then acknowledge her struggles during her speech.  I was proud that my Representative, Adam Putman recognized me on the street in DC.  My son’s voice was being heard and I was seeing change.  The best way I can define my politics is to say that I was my father’s daughter – I was a Republican.

In 2012, Governor Mitt Romney was running for President against President Barak Obama.  There was a significant amount of debate about healthcare and Medicaid issues.  Since Mike is covered under Medicaid, I truly wanted to take a closer look at what both parties were proposing.  So, there I sat, watching Martin Bashir on MSNBC – not certain who I was going to vote for:

 

 

“WTF – Did he just say, CHARITY?”

YES, his response to funding the proposed cuts for the basic care of disabled Americans was that the funds would be provided by the charitable contributions of corporations.  My son should live on CHARITY?!

(INSERT MOMENT OF SHOCK, DISGUST & DISBELIEF)

The next day, I threw on my vintage Jeb Bush t-shirt, jeans, flip-flops, and my big sunglasses and headed to the Republican National Convention in Tampa.  The entire city was on lockdown and I was surprised that there were no public areas for residents. Like many locals, I wandered the street looking for politicians and/or celebrities.

During my journey, I stumbled upon the headquarters for the Tea Party compound.  Entrance to ‘the compound’ required security clearance, which I did not have.  While I was speaking with the intern holding the clipboard of approved guests, I was approached by Stephen Bannon, the director of the movie, ‘Occupy Unmasked’ and frequent Fox News Channel guest.  He is basically the Michael Moore of the Republican Party.  Long story short, Mr. Bannon, in HIS words, has “a thing for blonds” – I was cleared and he escorted me into the event.  Mr. Bannon was even kind enough to allow me to interview him for my Facebook friends.

 

 

Unable or unwilling to answer my questions, Mr. Bannon decided that I wasn’t exactly his type of blond.  He alerted security and I proceeded into the party to mingle with the other guest.

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After a brief conversation with a Tea Party Radio talk-show host, I was placed ON THE AIR to discuss the proposed Medicaid cuts.  Again, it was stated to me that the Republican Party’s solution to their proposed budget cuts for the disabled was “charity”.

 

I left the event knowing who to vote for …

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My message to ALL of my then, fellow Republicans was simple: 

My son is a Severely Disabled United States CITIZEN

– He is NOT a Charity-Case!!

Autism Sucks!

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“MIKE WAS APPROVED FOR SOCIAL SECURITY SUPPLEMENTAL INCOME!!!!!”

And it sucks – AUTISM SUCKS!!  I’m filled with sadness as I sit imagining a life on the $710/month that our country is providing to meet the basic needs of disabled citizens.  Even worse, I’m one of the lucky ones – my son was approved on his first attempt.  I have been hit with a reality that has shot through my heart.  I’m NOT posting about his college acceptance letter – I’m posting about his approval for a life of poverty and a reliance on government assistance.

I know that there are those in the autism community who will attack me for stating that “Autism Sucks” and I’m envious of their perspective.  I’m also wondering if they have blinders on to the challenges facing our family members.  Do they know how many adults with autism are wasting away in group-homes?  Do they share my fears?  How do I embrace a disorder that has caused my son so much pain and struggle? How do I embrace a disorder in a society that does not provide a respectful life to its most vulnerable citizens?

Hating autism is not about hating individuals! It is about hating that individuals are in pain. It is about hating that my son was unable to ask for a drink when he was thirsty.  It is about hating that our family members are vulnerable. It is about hating that we must fight for them at EVERY step along the way.  It is about hating that they will outlive us.

I am beyond the ability to even imagine or consider what Mike would be like without autism.  He was diagnosed prior to his second birthday; I had a few years to dream before the gap grew too wide to ignore.  Those dreams are long gone and I love him unconditionally.  I love him, and HE is a wonderful gift, but I do not think that autism is a wonderful gift.  I do not want an autistic grandchild and I do not celebrate when I learn of a child being diagnosed.  I know the challenges that come with the diagnosis and it is not an easy journey.  I also don’t feel like my son was ‘kidnapped’ or that there is a typical person inside of him.  He is simply my son – Michael, my son, whom I love.

If you are one of the lucky ones, who celebrate autism, I respect your journey.  I hope that you will respect mine – especially today, when all I see is an unknown future of challenges. Until we live in a world that PROVIDES a respectable life to people with autism, I am unable to celebrate autism.  I’m far too busy at the fight!

Let’s Talk About SEX

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I hate to be the one to break it to you, but the joys of puberty are not limited to changes in physical appearance and the seemingly endless emotional rollercoaster.  There is also the welcome addition of an increased sex drive and behaviors.

I am a firm believer that every person with a disability is an individual, so I’m going to address this issue globally.  In all honesty, sex education isn’t about teaching the mechanics; it’s about keeping your child, adolescent or adult-child safe.  Sexuality is intrinsic – it is a basic function of humanity.  The desire to release sexual tension is neither diminished nor rendered extinct based on functioning and/or developmental levels.  Denying access to the appropriate guidelines necessary to nurture your child’s sexuality, is denying that your child is a sexual being.  It is, in fact, denying his/her humanity and rights to a respectful life.

If you’re still not motivated, consider the joys of dealing with these scenarios:

–      Inappropriate touching

–      Public Masturbation

–      Engaging in sexual intercourse

–      Viewing child pornography

–      Becoming addicted to pornography

–      Inappropriately touching a minor

–      Being physically assaulted in a public restroom for looking at another man’s genitals

–      Being a victim of sexual abuse

Our children are at high risk for all of these scenarios.

 Now that I have your attention, what do we do?

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After my own cringe moment, I thought to myself, my son is a person; he deserves to enjoy his sexuality just like everyone else.  It is my responsibility to teach him the socially acceptable places for outlet and provide the guidelines.

First, if you have hang-ups about discussing sexual behaviors with school staff, therapist, siblings, family members, and anyone else involved in your child’s life – get over it!  If you have a difficult time getting over it, you are placing your child at risk.  Learning how and where will keep your child out of jail and will protect them from becoming victims themselves.

GENERAL SEX EDUCATION PARENTING TIPS:

 –      Respect that your child is an independent person, who deserves a respectful life, inclusive of a safe, healthy sex-life.

–      Teach your child to take care of bathing, hygiene, and  dressing independently.

–      Start Young:  behaviors that are cute at 4 can be criminal at 14.

–      Distinguish private space from public space.

–      Allow your child to lock their door and establish a ‘Knock Before Entering the Room’ policy.

–      Teach your child how to use a public restroom.

–      Monitor Computer Access:  This includes blocking access to dangerous adult material and in some cases, allowing access to limited safe materials, within the perimeters of your family values and what is developmentally acceptable for your adult-child.

What and how you decide to teach will vary depending on your child’s ability to understand.  Utilize social stories to establish firm rules.  Continue to review and monitor your child’s understanding of the rules.  And above all, don’t freak out – it’s only SEX!