This is the Guy

Oh man, this is the guy.

This is the guy, who you look at for his behavior and say, oh man, what an asshole.

This is the guy, you stay away from if you are a woman, because you know…you know.

This is the guy in college, who you lean towards because he promises you popularity and significance, though you aren’t really sure.

But he says he will promise you all these things, and then he does all these things to you…

And he says they are fine, but you didn’t really agree.

And then, when you say you didn’t agree, he trashes you.

And then you are the bad person.

America, this is our President.

He promises things, then he assaults and offends you.

He regroups and says it’s fine.

But then if you complain, you are the enemy.

Ladies, we are stronger than this crap. He must go, but first we must address health care.

Call your rep and ask him/her to vote no on any ridiculous health care bill this ridiculous president puts forward.

www.house.gov

http://www.senate.gov

 

 

 

 

 

 

Parental Paradox

Blinking cursor on the screen again.

I know I need to write.

I’m overwhelmed. I write when I’m overwhelmed. Or eat. Or both, but I’m trying not to inhale a sleeve of Chips Ahoy. (Note: If you’re looking for the take care of yourself, so you can take care of others post today, this is NOT it.)

Also, if you’re looking for a post without swearing, this is NOT it.

My God, people, we have barely made it through the last weeks of school. Out of respect for my children, I will not go in to detail, but for the love of all things holy people, we finished the school year six weeks ago.  No one else did, but we did. And the last six weeks, have been ummm…a choice between hell and a shit show.

The usual spring assault of parents rightfully and proudly sharing their kids’ accomplishments; driver’s licenses, proms, and graduations leaves me in a constant spiral of celebration and guilt.  We do our own thing. Everything’s fine. I’m fine. Just fine.

And now it’s summer. And everyone is here. Like RIGHT here.

And all of those memes about appreciating the moments because they are fleeting? Yeah. I don’t care.

Because this is Attitude Central right now and I’m about to lose my stuffing.

So here are the things (see also survival tips), I said to my kid today:

Pick up your things. If you don’t, you will find it in the driveway. This includes shoes and clothes. Sorry neighbors.

If you tell me I’m the worst Mom ever, I require a t-shirt with such a label. Which you must earn money to purchase. By picking up dog poop.

With a nod to my upbringing, if you tell me you are bored…I will tell you to clean your room, and your bathroom.

Also, I love you more than anything.

But I’m tired. Because who knew when I had kids, I would have to match them in a game of snark.

 

~ Kate

 

 

 

The Mothers Before.

I fastened the scarab bracelet on my wrist this morning. I could picture it on my Nana Jane’s thin, wrinkled and freckled wrist. A simple piece, but one pronounced enough in my mind to withstand years of memories threatening to override it.

Nana Jane. Born on the Fourth of July, the youngest of twelve children. She grew up during the depression. She raised three daughters, while taking care of her ailing mother, and the siblings who realized she would take care of them too, because she took care of everyone.  She loved her country fiercely.  She swore a lot. She did not mince words.  Like, not a single word.

I removed the interwoven gold ring sprinkled with diamond spots, and thought of my Nana Peg. The smell of cigarettes filled my senses, and I heard her jaw cracking as she popped her spearmint gum.  I don’t remember her giving me the ring, but I remembered the comfort I found in this smell and in this sound.

Nana Peg. Pregnant and sending her husband off to World War II, to have him return with injuries sustained in the Battle of the Bulge.  She raised three sons, and was widowed when the youngest was ten. She went to work.  She listened to AM radio in her kitchen. She played the lottery and took trips to the casino.  She found love again and married. She went to Hawaii on her honeymoon.

I put on my lipstick in the car mirror today, and silently noted that my mother must have been sending me a  lipstick vibe across the miles because she never leaves the house without lipstick.  I recalled countless times sitting behind her in the back seat, as she pulled down the passenger side car mirror and put on her lipstick, popping her lips and rubbing them together to matte the color.

My mom. A baby boomer.  The oldest of three sisters. Driven. She went to college when girls didn’t go to college.  She did so by taking a ride to college campus in order to attend classes.  She never knew if she could get a ride back home.  When I was about three, my very pregnant mother, completed her Masters degree.  My highly educated mother then spent the next few years, driving my brother and me back and forth to activities; gymnastics, soccer, and swimming lessons. She taught us to lay our damp swim towels across the seat of the Chevy Impala to prevent our tender flesh from burning.  She made fruit pizzas and took them to picnics.  She played music all the time. She drove the Mercury station wagon back and fourth across the country when we moved away from family, because it was important to be at special occasions. She incessantly corrected every writing assignment I ever had. She took me to volunteer at a school for people with special needs.  She took us to museums, and I followed her as she read the captions in front of pieces of art. She played tennis and golf.  She started her own businesses.  She might have protested at a Capitol building.  She disciplined. She endured my teenage years. (Not much more to say here.) She always takes joy in sharing with others. She has never taken life too seriously.  She can be hurt, but she moves on, often saying “who has time for this?” She laughs a lot.

My mom recently sent me an email wondering where I got my spunk.

I stared at it incredulously for a moment.

Look at the women who shaped me, the most prominent of which being my mother.

My spunk is hereditary.

Today I am empowered by the history of the women who have shaped me.  I hope I am always able to honor their lives by being a testament to their mark on the world.

I will never be the mother mine is.  We are not the same person. But if you read the paragraph about my mom, and thought of me at all…I’ve got a shot at being one of the greats.

Happy Mother’s Day to all the incredible women shaping generations to come.

~Kate

 

 

 

 

Promspiration

You know what I’m talking about.

Every year, around this time, out come the stories…and they are lovely.  The athlete making the news for asking the girl with a disability to prom. Or the young man with a disability  being voted the Prom King.

And while I don’t deny that each is deserving; of a wonderful date or the title of Prom King, it’s the news part.

A person asking another person to prom is not news.  A person, asking a disabled person to prom, should not be news.

Mark is going to prom on Friday. He asked a girl himself.  It was not news.

We’d like to feature our friend Carter, asking his friend to the prom.  It was not news.

These are things teens do.  Because they are teens. Not because they have disabilities.   But just because they want to do the things their peers do, as their peers do.

There’s an amazing video about this, which results in this picture Promposal.  And I am the worst at technology, but suffice it to say, Marissa said yes.

And Carter and Marissa are going to the Jr. Prom together because he asked her, and she said yes. And her shoes are great (sidebar.)

And it’s awesome.

 

~Kate

 

 

 

It’s Your Child

Picture it.  A saloon in an Old Western movie. Cue the cowboy entrance music. Listen to the silent room as his boots step on the creaky wooden floor.  Watch him tilt his head downward, put his hands on his hips to rest a hand on his gun, as a bead of sweat rolls down his forehead.

Yeah. That’s how I picture my entrances to IEP meetings.

In reality, I make sure I’m caffeinated, showered and wearing lipstick.  Oh, and I’ve usually been up for days before making sure I know every law there is that might apply to my kid.

Just like the cowboy has his holstered weapon, I have my knowledge of the law.

Look, I know what it feels like to be outnumbered, as you sit down at a table with your IEP team (Law and Order music fits nicely here.)

And look, I know how awkward it can feel to question a teacher, or a therapist or an “expert” who is working with your child. (16-Candles-Anthony-Michael-Hall-trapped-under-the coffee-table music is appropriate here.)

But people.  Get over it.

Ok, that might have seemed harsh, but I’m serious.

Here is the most important piece of advice I have to offer. YOU. Yes, YOU parent, are a LEGALLY required member of the IEP team.  Which means, YOU. Yes, YOU parent, have a legal voice in shaping your child’s educational plan.  As such, YOU must know your stuff. (Sorry, NKOTB “The Right Stuff” popped in to my head an now I’m done.)

The Individuals with Disabilities Education Act (IDEA, not idea), which is the federal law overseeing educational plans from early intervention through adulthood provides clear definition of educational supports under the law.  Google it.

Free and Appropriate Public Education (FAPE) – “All qualified persons with disabilities within the jurisdiction of a school district are entitled to a free appropriate public education.”

Least Restrictive Environment (LRE) – “means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers.”

We are all friends here. And friends tell each other honest things. I’m honestly telling you to know your rights.

Go here: https://ed.gov/about/offices/list/osers/osep/index.html for federal IDEA laws

Federal laws always override state regulations, but state regulations are important. Google.

And if your school district is not implementing any laws, here is how you file a complaint:

http://www.wrightslaw.com/idea/law/model.safeguard.form.pdf

 

But here’s the thing.  Your advocacy has just begun.

Talk to your people, and actively seek out those who have come before you.  The Jedi Masters. (Cue Star Wars Jedi training session sound effects.)

Find advocates and lawyers in your area.

Know your rights. Know them. Repeat them. Share them. You are the person who knows your child the best

It’s your child

~Kate

 

 

16

Mark turns 16 tomorrow.

Holy crap.

So I’m terrified.

Aside from the vanity terror of being sixteen years older than I was….and let’s just ink about that for a minute, because holy crap again.

I am trying to stuff down all of the things I know that will happen when Mark graduates  from high school, in two years. He loses educational services. And I am terrified. But remember, stuffing that down.

Because tomorrow, Mark and I are headed to an event at our state’s Capitol where he will present four points he’s written about autism. Here they are:

1. Here’s what autism awareness means to me. It makes peeps care more about autism.

2.  For me, autism can be challenging at times, but it’s also good because I have a great memory and can memorize all of my castmate’s lines in the musical.

3.  Sometimes, I have a difficult time interacting with other people the way I’m expected to

4. I want legislators to help me find a good job and get the right support.

And there it is.

Not sure I can ask for more .

Sixteen years ago, I laid in a hospital room, pumped up on drugs to help evict a little dude from his cozy home.  Eighteen hours and one c-section later, he arrived.

Perfect.

 

 

 

Yay Autism Awareness, Action and Prepositions at the End of Sentences.

It’s April.

It’s April 2nd, specifically. The day that the United Nations declares Autism Awareness Day.

A seemingly benign declaration, because yay Awareness, right?

Well, yes. Yay Awareness. Awareness leads to dunderstanding, which leads to acceptance, which leads to action. All are important. But it’s that place of action…that’s the stuff, my friends.

“That’s where it’s at,” as the saying goes.

Holy hell, that was a really hard sentence for me to write, as a sentence should never end in a preposition.  Just needed to say that. Wow.

But I wrote it, because it’s accurate. The “at” part.  Action is where it’s at.

“Action, a verb…that expresses something that a person, animal, object, or process in nature can do.” (Dictionary.com)

So if you’re a person, which I’m guessing you are, action applies to you. And here are just a few actions you can take:

  1.  Tell your story. If you are autistic. If you are a parent, grandparent, sibling. Tell it respectfully.  Tell your legislators, your school board members, and your neighbors. Whatever your story is, tell it.  Encouraging others to tell theirs, is nice, too.
  2. Help. Pride is a hard thing, so sometimes people say no when offered help. If you know a family with a newly diagnosed child, bring ’em a meal.  Keep a sibling busy as the onslaught of therapists descend. Cake is nice, too.
  3. Volunteer. The saying goes, “if you know someone with autism, you only know one person with autism.” Autism is a spectrum disorder, and comes in many shapes and sizes. Volunteer with an organization which allows you to appreciate the autism spectrum, and get to know people at all different points. Take time to understand their differences and similarities, just as you would when getting to know any new person.  I promise you will learn and laugh and grow. Agencies which support autistic people are often grossly understaffed and underfunded. A committed, volunteer could be a big help.  A big donation is nice, too.
  4. Stop using the R word. Not only is it antiquated and inaccurate, it’s also incredibly hurtful.   It’s a slur. Slurs are not nice.
  5. Listen. I don’t share our story for pity, I share it because I want people to listen. And stand with us, and so many of our friends, as we do some really hard things. Sometimes every day. Sometimes multiple times a day.  Teach your kids that differences are good. Show them by embracing inclusion and diversity. Invitations to birthday parties, are nice, too.

 

So, action is where it’s at    Whether you light up blue, or don’t, I want you to remember the “at.”

Our work doesn’t end on April 30th

~ Kate

Cadillacs and the Middle Finger

If your child has an IEP, how many of you have heard this, from a Special Eduction Director or some administrative member of your IEP team?

“Your child is entitled TO services, but NOT the Cadillac of services.”

Show of hands? I see you, and you, and you.

Yep.  People really say this. I’ve heard it myself.

But today, the Supreme Court of the United States ruled UNANIMOUSLY, that A program, was not appropriate. In fact, the Supreme Court UNANIMOUSLY ruled that the “de minims”, or “lacking significance or importance” is not an acceptable protocol. (Endrew F. v. Douglas County School District)

And further, that an “appropriately ambitious” program was something that each student should have.

This decision overturned a lower court decision, in which current Trump Supreme Court nominee Neil Gorsuch ruled in favor of the school district.

So Judge Roberts summarized:

“When all is said and done, a student offered an educational program providing “merely more than de minimis” progress from year to year can hardly be said to have been offered an education at all. For children with disabilities, receiving instruction that aims so low would be tantamount to “sitting idly . . . awaiting the time when they were old enough to ‘drop out.’

Forgive me here, but I can’t be gracious. For all of those who knew their decision to deny services was wrong but rationalized it under “de miminis…” And let’s face it, I’m giving a LOT of benefit of the doubt here.  I know who you are. I’ve looked in to your eyes as you denied my child services.

So here’s the finger for you. Nope, can’t be gracious.

And to the Special Ed Administrator who told me that he didn’t owe us the Cadillac of programs…

For once we win. And I am going to hold you to every word of it. Every. Single. Word.

`Kate

https://themighty.com/2017/03/supreme-court-rules-schools-must-support-students-with-disabilities/

 

 

 

 

 

 

 

We Should All Take a Note From Him

“Oh we love Mark,” she said. “He has perfect pitch.  He knows everyone’s lines.  We should all take a note from him.”

Ignoring the teen mantra for me to not embarrass him by my sheer presence, I spotted one of Mark’s cast mates in the big musical and well…we all know how that was going to go.

I introduced myself as Mark’s mom to this lovely young woman and again willed the tears back in to my eyeballs as she responded in this way.

At face value, her words were just lovely.

But her choice of words were important. They were important for me to hear, and to know and to let settle in for a while.

When Mark was little he would repeat the same lines from TV shows over and over.  He did not really have any functional language, meaning language he could use to get what he needed, until the age of five.  But, he knew every line from every Bob the Builder TV show.

Whenever Bob and Wendy and the gang would have a job to do, Mark could be heard loudly and emphatically saying, “Can we fix it? Yes, we can!” He could transfer this to his kindergarten classroom when someone was in need of a little motivation. These were the only words he had to encourage anyone, in any situation.  They were deemed inappropriate, because his functional language was still so far behind the “norm.” A specialist advised us to ask him to discern “his words” from the words of a character.

I came to realize that this was for our benefit, not Mark’s.

Mark found other shows from which he took language.  And by others, I mean just about every kid show available at the time. The Wiggles, Mickey Mouse Club House, Blues Clues, Imagination Movers, Yo Gabba Gabba, Bear In the Big Blue House, Barney and the beloved Sesame Street.  He memorized movies like Shrek, and Cars, and 101 Dalmatians.  (Can I just throw in one giant trademark here to cover myself?)

He repeated scripts during school, and during rides in the car. He began to answer questions with scripted responses from Sponge Bob. He expected people to respond in the way the script went on TV. I came to understand it was predictable socialization. Our child psychologist told us to allow him a certain amount of time to “stim” in front of everyone, and then he had to go to his room to do so privately.

I came to realize, that this was for our benefit, not Mark’s.

Around this time, I thought that Mark’s penchant for recitation might serve him well in theater. Winging it as usual, I signed him up for Saturday classes with a local children’s theater group, and every Saturday, I drove him and a young woman who served as his aide, to a broken down old house in the city which had been transformed in to a theater.  He struggled.  But he always wanted to go back.

Over the next several years, I watched Mark learn to use his scripting, for general conversation. His scripts became contextually appropriate.

So when this lovely young woman shared with me that Mark knew everyone’s lines, and that the cast might “take a note from him,” it gave me pause.

All along, Mark had been doing what he needed to do in order to exist in our world.

I came to realize, that was this for our benefit, AND Mark’s. But we missed it.  We had all missed it.

And now, someone who knew him the least if only  by the short span of time they have known each other, valued and understood him. She wasn’t a specialist, or a doctor. She was a peer. And a fellow thespian. And friend.  She was able to see  to freely articulate that a behavior once deemed “inappropriate,” was actually an enviable skill.

And I am so thankful.

Specialists and doctors are important.  They set us on a path with a word, or a set of descriptors to understand what might lie ahead.  It can be easy to get wrapped up in the “nevers” or the “can’ts”

When Mark was diagnosed with autism, we were told he might not really every speak, or have relationships, or be able to fully participate in school.

But there he was.  Delivering his lines, singing his heart out with his classmates and peers. And doing a damn good job of it.

So, I’ve made a note. To remember this day, and all of the successes it represents.  To remember that Mark comes with his own compass, and it’s ok for that to be his guide and mine.

Most of all, I will remember what the lovely young lady said,

“We should all take a note from him.”

Yes. Yes, we should.

 

~Kate

 

 

 

 

Shampoo, Equality and How They Are Related.

I received a suggestion today.  It was that I focus my advocacy in one place, because I could not save the world.

To be clear, I am well aware that I cannot save the world. To further clarify, it is nowhere in my daily plan to attempt such a feat.  Plus, I’d probably need an outfit for that, and that seems like a lot of work.

So I got a bit of a chuckle out of this suggestion. I don’t believe it was given mean spiritedly, or with disdain. I actually think it was given as a suggestion from one woman to another, to take care of myself. Which is actually quite kind and thoughtful.

But here’s the rub.

Ask me what motivates me to advocate for my child and/or for disability rights in general.

Go ahead, ask.

Here’s my answer.  I advocate for my child and for disability rights in general because I believe each human being should be given equal opportunity to be successful.

Ask me what motivates me to advocate for myself as a woman and/or for women’s rights in general.

Go ahead, ask.

Here’s my answer. I advocate for myself as a woman and/or for women’s rights in general because I believe each human being should be given equal opportunity to be successful.

 

Ask this question of me in regard to my friends who are African American, who are Latino, who are Muslim, who are gay, who are Jewish, who are immigrants.

Go ahead, ask.

Here’s my answer. I advocate for all of these humans and the rights of humans in general, because I believe each human being should be given equal opportunity to be successful.

You see the pursuit and attainment of equality, is well, all equal to me.

If you’re a child of the 70s like I am, I bet you remember Herbal Essence shampoo. At least I think that’s the brand. It came in a green bottle, I think, and the Eve-like woman on the front had long, thick, luxurious hair. Can you picture it in your mind? Ok, turn the bottle to the back and read the shampooing instructions.  See them?

“Lather. Rinse. Repeat.”

Didn’t matter what color your hair was, or how long it was, or how you wore it at all.

And this is kind of how I see advocacy in general, but with different words.

Rights. Equality . Repeat.

 

It is impossible for me to separate advocating for an equal opportunity to be successful for one, without doing the same for another.

So while I maintain that I have no plans to save the world, lest I have to get a new outfit, the teeny, tiny fibers which make up my character demand that when I speak of one person’s right to equality, that I speak for every person’s right to equality.

That’s me.

Rights. Equality. Repeat.