Author Archives: Rachel Kenyon

About Rachel Kenyon

Rachel Kenyon is an Army Wife, Aspie, Advocate and mom of two beautiful babes - The Boy (10) and RM (7). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome.

The Grocery Store: Take Another Look, Asshole

This is my daughter.  She is autistic. And let me tell you, she is F-ABULOUS.

bw6

This morning, I read THIS post by Matt Walsh and WHOA – it was delightful to say the least.  Because one human being took the time to school another human being (we’ll call him “Asshole”) on the gross stupidity of making a comment like: “Man, some people need to learn how to control their f**king kids.”  In a grocery store.  Like, as if, the grocery store wasn’t torturous enough for kids and grownups with kids, Asshole had to share his clairvoyant perspective on the situation.

Way to go, Matt Walsh.  Your children are blessed to have you.

So I will take the liberty of adding this dimension to Mr. Walsh’s encounter.  Our dimension.  Our encounters with Asshole at the grocery store.  You see, every day my baby girl steps outside our door into a world that doesn’t quite understand her yet.  Where stares and whispers and outright insults assault her everywhere she goes.  Like in a grocery store when she is simply overwhelmed by the lights, noise, crowded aisles, or having to wait in the deli line for a slice of heavenly cheese.  Who knows what any child in a grocery store is flailing and wailing about?  You don’t, Asshole.  You just DON’T.

And so my daughter walks this world a target for Asshole and those like him.  She is target for gross misinterpretations and judgments of not only my parenting ability, but her intelligence.  Because commentary like above can not only be that bad, it can be so much worse.  So much more hateful.

My daughter can hear you, Asshole.  She understands every crinkle of your nose, every look of pity and she knows that your condescending tone of voice is more about your insecurity and discomfort than it is about her communication barriers or tantrums in the grocery store.  So whether you are claiming to judge me or my parenting style, you are really judging a seven-year-old child.  And that really makes you an asshole, Asshole.  And anyone like you who judges by first glance alone and dares to assume why a child is having trouble in a grocery store, or a park, or a mall, is not far from the kind of asshole that uses the R-word.

bw4

And seriously.  The F-word is so much more appropriate.  Does this child look anything other than F-ABULOUS?

bw1

My daughter may have challenges that are unique to your own, Asshole, but she isn’t complaining.  She is overcoming.  She hears the conversation and she is saying I AM WORTHY.  Behind her and so many others you don’t take the time to see, Asshole, are parents who love these children and are sticking by their guns in those grocery store aisles because every day is a battle.  A battle to teach and love and have patience.  A battle to overcome you, Asshole, and your judgy stares.

It is people like Matt Walsh that are changing the world every day with their WHOA – NO YOU DIDN’T courage to stand up to you, Asshole.

Each day WE step outside our door and into the world, WE are asking you to embrace US.  WE are expecting greatness of heart from YOU.  WE are expecting nothing less than what we all yearn for on this earth.  Love and acceptance.

bw2

Even FOR you and FROM you, Asshole.

That mother in the grocery store was FABULOUS.  Mr. Walsh was FABULOUS.

You, Asshole, have some growing and changing to do my friend.  And then maybe others with call you Fabulous, too.  And then we can all hang and be fabulous together.  Like it should be in this world.  A whole lot of FABULOUSNESS.

bw91

This is my daughter.

She is autistic.

Go ahead and drop the F-bomb, y’all.  Because she is F-ABULOUS.

What will YOU be?

 

 

.


I Will Even STARE. How’s THAT?

So many times, especially as parents to autistic children, we hear the words “eye contact” in a way that suggests they were written on the tablets brought down by Moses himself.

moses

Looking people in the eyes while having a conversation is great, but if you continuously demand that of someone who is predisposed to feel uncomfortable in doing so, it can on occasion result in the truly gruesome side effect of AWKWARD STARING.  Or, far worse, it can set up an individual for failure and lead to negative feelings of self-worth.  There should be no form of correction or reprimand regarding eye contact when an autistic person is boldly making the attempt to communicate with another person in the first place.  And in no other disability population do we literally demand eye contact and hail such as the benchmark of progress.

staring

Not only are Autistics expected to purposefully stress their already overwhelmed sensory systems by making eye contact, it is done with the expectation that it will somehow make autistic people better at listening and communicating.  That is simply absurd.

I am DAMN GOOD at eye contact.  I am so damn good that I can win a staring contest.  With myself.  And I am fortunate that no one harped on me all throughout my life to make eye contact.  It just so happens that I developed this awesomesauce skill all on my own without even knowing it.  Because I AM AWESOME.  Really, because I was observingEverything.  I knew I had no earthly idea what was going on most of the time, though I didn’t know it had a name, so I observed intently.  And I mimicked what I thought was acceptable and popular through watching others while they talked.

So after 38 years and counting, I don’t just make eye contact like an amateur.  Oh no.  I stare.  I will stare at your eyes, your mouth, your teeth, your hairline, your earrings, that big honking zit one centimeter to the left of the five freckles just due south of your right eye.  (Sorry.  But no worries, seriously.  Because I am the LAST person to judge, I am merely studying you so that I can be better at being me.  Take it as a compliment!)  So I am a champion at staring.  You will think I am making eye contact the entire time and you will feel good that I am listening intently to what you have to say.  And I am.  Honest to God, I am listening.  I am listening with my ears, eyes, nose, and I am listening with every scratch or pick of the skin on my left ear and every crackle of my toes inside my shoe. DEAR GOD. I am listening with the distraction of my own heartbeat pounding in my neck.  I do all of this so that I can listen.

For me, making eye contact, or at least staring intently somewhere in the vicinity of your eyeballs, is a lot of work.  There are times I physically CANNOT make eye contact during situations when I feel extremely stressed, uncomfortable, or threatened.  (Sometimes I cannot speak either, but that is for another post.)  It truly concerns me when I hear this commandment that autistic individuals are simply not functional if they are not making “the effort” to make eye contact when someone is speaking to them.  I wholeheartedly DISAGREE.  For some, not making eye contact is the only way they can listen to what another person has to say.  It is different for everyone.

I do, however, support a gentle approach to assisting autistics to improve their ability to make eye contact only if an individual has the desire to try, to connect using the eyes, as a means of reciprocal communication skills.

Eye contact is important in society because non-autistic interactive human beings have evolved into complex communicators.  But that doesn’t mean we make eye contact the Gold Standard of success for autistics.  It certainly cannot be assumed to be a benchmark of intelligence, or listening skills.

Some people will look you in the eye.  Some will stare.  Some will stare with an awkward flair.

Just remember, there are so many more ways we listen and take in information - with our ears and our hearts, with taste, touch and smell.  Most importantly of all, we listen with open minds.

Dave Matthews Band “So Much to Say”


Autistic Shibboleth: The Secret Handshake of the Adult Aspergian

[UPDATED 8-12-13, @ 09:58am]

  • Definition of shibboleth (n)*

shib·bo·leth

[ shíbbə lèth ]

    1. catchword or slogan: a word or phrase frequently used, or a belief strongly held, by members of a group that is usually regarded by outsiders as meaningless, unimportant, or misguided
    2. common saying or belief: a saying that is widely used or a belief that is widely held, especially one that interferes with somebody’s ability to speak or think about things without preconception
    3. identifying word or custom: a unique pronunciation, word, behavior, or practice used to distinguish one group of people from another and to identify somebody as either a member of the group or an outsider

The origin of Shibboleth is actually biblical.  [It can be found in the Book of Judges, Chapter 12, verses 1-15.]  In layperson terms, it was a code word to prove your identity in gaining passage across the Jordan River.  If a person was asked for and responded with its incorrect pronunciation, that person was slain as an enemy.  For it was believed that only those who held the true faith and protection of God, would pronounce the Shibboleth correctly.

So I ask.  What is the Shibboleth for Autistics in our world today?

What is the correct word, or symbol, or advertising slogan we must use to correctly identify ourselves in this world without fear of persecution or rejection? Because ribbons and puzzle pieces just do not seem to be the Shibboleth we are looking for.  Lest we forget that the DSM-V is not our Shibboleth.

Who gets to decide if I am representing the Autistic Shibboleth correctly?  What is the punishment if I don’t?  How many friends need to turn their backs to me before I can correctly communicate Shibboleth?  Will there be a ceremony like in “Animal House”?  Thank you, Sir, may I have another?

Am I expected as a high-functioning adult with Aspergers to throw my HIPPA rights out the window and fork over my diagnosis to the public?  To include the part from the interview about being molested by a relative because I clearly didn’t understand at the time what was going on?  How about my issues with sexuality and gender?  Should we just begin an open dialogue now of how I was nearly killed by domestic violence in my early 20′s?  Or should we have tea first?

Exactly what is the Autistic Shibboleth that I can shout from the rooftop so that the non-Autistics in the Autism community can verify my credentials and the Neurotypicals on the outside of A-town can go ahead and believe that I am an Other?  Because I have to tell you, not one of My People has yet to say, “Are you really sure you have Asperger’s?”

Here is what I consider my Shibboleth:

Because on my very first outing as an official Aspie, I was honored to spend an evening in New York with two amazing families and their friends – The Paris-Carter Family and The Robisons, Ms. Kirsten Lindsmith, and Mr. Alex Plank – at a play entitled “The Laramie Project”.  I was the first to arrive in the lobby of the theatre. I was terrified.  New place.  New people.  All by myself.  So I went up to the ticket window and politely asked the woman there if she could spare a rubber band.  She looked a little puzzled and I am sure there was some snarky giggling, but when I explained that I had Asperger’s and was waiting to meet several new people and I was nervous, the rubber band would help calm me, she smiled and the rest of the folks in the lobby all smiled, too.  I put the band on my wrist and began to fidget away.  A short time later, sitting with my new friends, we talked about my rubber band.  It was my Shibboleth that day.  A pile of rubber bands later, all agreed it was fabulous that something so small could be so transformative.  And for the first time in my life, I felt like I was with My People.

So I ask.

When will there not be a need for an Autistic Shibboleth and when the hell can we just get on with it?

When might we stop needing hour-long PBS specials to share as our Shibboleth just to convince loved ones we’re seriously on the spectrum and not just looking for a cool new label.  (Because the label I would have preferred would have been “F-350” and it would be sitting in my driveway.)

As Popeye so eloquently said:  I yam what I yam.

Good Sunday to you all, My Friends.

Peace be with you.

Rachel

[***UPDATE*** 8-12-13 @09:58am.  It seems sometimes when I write and seek to make a point that generalizes what can happen within this community, some worry for me that I am writing in anger or sadness. That is not necessarily the case. As with this post, I just wanted to paint a picture for those who may think the diagnosis itself or the label is more important than the person. That reaction, a demand for *proof* or the disclosure of details that the individual may not and should not feel they have to share is dehumanizing. Most especially when it comes from those closest to us.

Learning that I was born with, and have lived with, a completely different neurology than assumed for the first 37 years is a very lengthy process.  There was the initial suspicion.  Then the exploding light bulb when it all instantly became clear in a flood of emotions and tears.  There was talking, lots and lots of talking, with my husband and my parents.  There was anger.  Then depression.  Then acceptance.  And now, my friends - joy.  I am so grateful to know me, the real me, better than I ever could have had I dismissed the possibility.  When I was ready, I sought confirmation from professionals in psychology and autism.  It's been almost a year now.  Slowly, I am piecing together my past in a whole new light, a brighter light, a light that shines where darkness once blinded me.

And miles to go before I sleep,
And miles to go before I sleep. - Robert Frost

I'm just fine, by the way, thanks for asking. Cheers!]

[ADDITIONAL THOUGHTS 8-13-13 @08:32pm. Inspiration for this post was from The West Wing, Season 2, Episode 8 "Shibboleth" and my inability to follow written and verbal directions when attempting to swipe my Visitor's Pass to gain access upon my visit to the White House in May, 2012.  Quite literally, I thought the uniformed gentleman standing before me was going to put me out of our misery.]


Family Excluded From Pool Membership Because Autistic Son Requires Flotation Vest

“If we make an exception for one, we would have to make exception for all.”

Photo courtesy of ellingtonridge.org

June 27, 2013  [Updated June 28, 2013 6:50am]

Ellington, CT -  An exclusive country club in the suburbs of Connecticut excluded a family from becoming members because their autistic son would require a flotation vest while swimming in the pool.  With recent headlines of autistic children drowning rather frequently, one would think that a flotation vest would be a fabulous idea.  It seems it would be a much grander idea than outright discrimination of a person with disability and that person’s entire family.

However, when Mrs. Cristin Millen, a seventh grade Language Arts teacher in Ellington arrived at the Ellington Ridge Country Club to begin the membership process it never occurred to her that her son’s autism would exclude them from enjoying the same privileges other residents in the area enjoyed as members.  She left without being given an application but was told someone would get back to her.

“I almost didn’t say anything about his autism at all because I assumed it wouldn’t possibly be an issue,” said Millen.  “But when I became aware that the club had a rule banning flotation devices from the pool, I mentioned that I have a son with autism who is verbal, follows directions, and is a good swimmer.  I explained that we would be in the pool with him the entire time and that the vest was really just for peace of mind as he has always worn one.”

Ellington Ridge took Mrs. Millen’s request for exception under consideration for less than 48 hours before responding with a denial of membership.  Mrs. Millen was told that if an exception was made for one, an exception would have to be made for all, and that was not possible.

This country club is a private facility, which means that ordinarily the club owners and members could do whatever they please, invite whomever they choose to join, you get the idea.  But under the Americans with Disabilities Act (ADA), any private club that opens its doors to the public at any time, waives that right.  The Ellington Ridge Country Club offers to open its doors for banquets, weddings, business meetings, fundraisers, and birthday parties.

Wait a minute…

Can you imagine?

Can you imagine if someone like ME thought to plan my autistic daughter’s birthday party at a beautiful venue such as Ellington Ridge Country Club, put down a chunky deposit, invited ten or so other Flaptastic kiddos and their parental units? What would happen when all of us showed up at the pool with our vests and inflatable wings? Would we all be tossed to the curb?

Can you imagine?

Can you imagine, Ellington Ridge?

Excluded Flotation Vest and the Handsome Child Who Wears It

Excluded Flotation Vest and the Handsome Child Who Wears It

UPDATE: Friday, June 28, 2013 6:50am – Local media reached out to the ERCC yesterday afternoon for comment.  Management quickly asserted that Mrs. Millen never filled out the application, so therefore the club was unable to review her family’s request.  However, in WFSB’s on air coverage last evening, management admitted that Mrs. Millen was not given an application during the miscommunication throughout the week but that ERCC would happily accept the family’s application with waiver for the vest.  In an email communication from management to Mrs. Millen last evening the same offer was made but included a timeline in which the Millen Family was advised it would take until mid-July before their application with waiver to accommodate their son’s need for a Coast Guard approved flotation vest could be approved by the Board of Directors of the Ellington Ridge Country Club.

LINK to WFSB News Coverage > CLICK HERE.

 

WHAT DO YOU THINK??? COMMENT BELOW…


Graduating Typical Peer Preschool

Why My Seven-year-old Autistic Daughter’s Best Friends Are All Over 35

preschool-graduation-ceremonies

Today should be a joyous day for us here. There should be balloons and presents and cake and donkey rides or something.  But instead, it will be a quiet snoop and poop mission (real infantry term, you can look it up).  SGM and I will slide into the school for graduation and slide out, likely with me retreating into the fetal position in the bed of the truck as he takes us down the highway toward home at 80 miles per hour so that the sensory thrills of the ride numb me into a coma.

Let me explain.

It has now been a little over two years since RM began attending her outplacement autism school.  The one that took me fourteen months to get her into.  They have an amazing typical peer preschool on site, NAEYC-accredited, with staff that is fluent in sign language, art, music, and love.  The peers are ages three to five and are hand-picked to be excellent models for autistic friends.  In this setting where RM has spent about one-third of her time over the last two years, she has learned critical basic pre-educational skills such as turn-taking, group games, learning to sit for circle time with weather and calendar, following simple group activities, learning about friends and social themes like birthdays, holidays, and family.

Her time there has been priceless.

And filled with joy.

So today is a bitter pill to swallow.  My baby loves her friends in preschool.  But she is now monstrously larger than they are, and as she is turning seven in a few weeks, one cannot argue that the time to move on has come.  I accept that.  The school has been fabulous about slowly weaning her time out of the preschool over the last few months, so that it shouldn’t be a recognizable trauma for anyone other than me.

So here we are.  As she rode off on her van this morning the chest pains came and the crocodile tears and SGM telling me this is all ok, this is her path right now.  And sure, I agree.  And I didn’t even punch him.  He’s right. And I continue to cling to the God’s honest belief that truly, RM’s very best friends are not the children at the school anyways.  That was never the case from the very beginning. RM is in love with her teachers.  The DOZENS of adults who love her and care for her and teach her and joke with her and smile with her and talk with her and listen to her every single time she has something to say.

She thrives at this place because it is the grownups that hear her and understand her.  Not the typical peers, nor her classmates.  She loves this place because she is challenged there, not by communication boundaries, but by academics.  She loves this place because she knows well enough that these grownups are going to teach her the correct social cues every time.  She doesn’t have to decipher the behaviors of the typical peers there anymore.  And for now, just for now, I am ok with that. I have to be.

Here at home RM has her nine-year-old brother who adores her as her best friend.  They belly-laugh and play legos and watch silly videos of themselves and belly-laugh some more.  They are madly in love with each other.  If school doesn’t have the “age-appropriate” peers, well I have the best one at home anyways.

Meanwhile, trust that I aim to correct this situation at the outplacement.  There are far too many brilliant options to be considered.  There are ways we haven’t yet found to give our kids access to social time with typical peer models, so let’s find them.

Even the “best” can always be “better”.

My hope and dream for all parents is that you truly, deep within your heart believe that those scary sounding letters “I.E.P.” can start to look less daunting.  I want you to believe that you have the right, and the power, to build a program that has never been built before.  You can build it for your child.

There is no such thing as, “We don’t do that.”

Cheers,

Rachel


DoD Reports to Congress with Mystifying Excuses for Failing to Comply with Legislation

“Pilot Program” Held Paralyzed by

Pentagon’s Divisive Concern for Military Autistic Children

Autism Speaks obtained a letter from DoD to leaders in Congress dated May 7, 2013, expressing the several mystifying factors that make it impossible for autism therapies to be implemented.  CMKAA, a federal law, was passed in 2012 and modified in Committee as a Pilot Program to be implemented no later than April 2, 2013.  Families are still waiting.

It sounds like the DoD is truly worried for our military families with autism.  If they start treating some of our kids, just think about what would happen:

First, there are too many kids to treat and not enough providers.  Can you imagine? Even if one more child with autism received the treatment he or she needs while we figure this mess out?  Well, that would be tragic.  And I think promoting career advancement in the field of BCBAs is a stupid idea, too.  I’m with you, DoD.

Next, apparently due to a lack of mobile diagnostic capability, the military kids who have autism are too spread out to find them all.  So why start the search?  We might actually find them.  If we find them, we may have to treat them. Shhhhhh.  Next thing we will find at our doorsteps are ghillie suits for our autistic kids with a note from the DoD that says, “Put this ghillie suit on your kid. Ghillie suits cure autism. And here’s a map to the nearest pond.”

Cannot treat what you cannot see.

Cannot treat what you cannot see.

If that doesn’t work, at some point the DoD will just have to start to acknowledge the existence of our thousands of autistic kids and that the treatments proven to work um, actually do.  Which means, DoD, you will have to start treating them.

I know, DoD, if you start treating them, there will only be more and more to treat because autism is increasing in prevalence.  So you’re right, DoD… let’s just pretend this all never happened.  Coffee, anyone?

DoD letter

[The petition to Congress to actually MAKE autism treatments available to all military dependent children is still active and every signature sends a letter directly to every Armed Services Member urging them to take action. You will find the petition HERE. Sign it. SHARE it. Thank you.]


In the Land of Oz (Home of the IEP)

I was just tending to the farm and trying “not to get into any trouble.”  SGM’s boots had just hit the ground in Afghanistan.  RM was three years old and relatively healthy.

RM had transitioned into the special education preschool in district and was making very little progress.  When the autism diagnosis came, the relationship with the district became a cyclone of lies and deceit and I was swept up into their storm.

I don’t remember how bad it really was.  I only remember darkness and the feeling of spinning…

When I came to in an unfamiliar land, little did I know then that my house had landed purposefully atop the Wicked Witch that viciously ruled the Munchkins.

Another autism mom (RM’s YMCA teacher from more than a year prior) magically appeared descending through the clouds.  She was surrounded in an effervescent glow with a gentle smile that could kill and in place of an exquisitely sparkled wand she carried a bloodied and bruised wooden bat.

She did not hand over a pair of ruby shoes.  No.  She handed me the bat.

It would take entirely too long to explain the misadventures down the Yellow Brick Road in this one post, many are highlighted in the archives here.  But I will tell you that along the way to an appropriate outplacement I met many characters in The Land of Oz.

The Scarecrow led me in the wrong direction.

The Tin Man really had no heart.

The Cowardly Lion hid behind a title and a desk.

The Wicked Witch always waited until four o’clock on a Friday to mail shit to my home.

There were Flying Monkeys and a Forest of Fighting Trees.  All terrifying at first glance but would reveal themselves as completely ineffective at their jobs.  They relied on gruesome makeup and the special effects of words like “Due Process” and “Mediation” to keep up the charade.

I was desperate to make my way to Oz.  I thought the power I needed to find comfort at home again could only be granted by The Great and Powerful Wizard.

I honestly had no idea who The Wizard was.

I went to Congress and looked for The Wizard there.  I went to The White House, too.  I went on cable news and begged an entire nation to help me find the answer.  WHO is this Wizard?

WHO do I BEG for an education for my child?  WHO will fight for her?  WHO will LOVE her enough to say YES?  WHO will seek justice for her?

WHO IS THE GODDAMNED WIZARD??

When my child’s placement is threatened, WHO do I fight?

When her programming needs to be reframed, WHO will write the goals for her to access the same curriculum as every other child?  The science and the social studies, too?

WHO will teach me the laws and how to hold the district accountable?

WHO??

PLEASE. TAKE ME TO THE FREAKING WIZARD.

Oh.

What?

I see.

It’s me.

I was searching for what was there all along.  I just didn’t understand that I possessed the brains, heart, courage, and power to make it all happen.

Yes, I needed a little help from a Good Witch and countless other parents who shared their own experiences. Yes, I needed the bat once in a while to ward off The Flying Monkeys.  Yes, I needed to educate myself.

But in the end, it took only a few emails and a bucket of water.

Because really, truly, I had The Power all along.

So do YOU.

So do YOU, my friend.

Don’t let the cast of characters in Oz make you feel less than THE MOST IMPORTANT, EFFECTIVE AND POWERFUL MEMBER OF YOUR CHILD’S EDUCATIONAL TEAM.

The Scarecrow is not smarter than you.

The Tin Man does not love your child.

The Cowardly Lion will never have your back.

At the end of the day your brains, love for your child, and courage to take charge of the Individualized Education Plan (IEP) are the most tangible and relevant elements in a land somewhere over the rainbow.

When I felt like the characters I faced were not acting in good faith, I opened up The Curtain using The Freedom of Information Act (FOIA).  I used a State Complaint and the Individuals with Disabilities Education Act (IDEA) to pour a bucket of water on The Witch.  You see, these are free and fairly straightforward tools that were created for ME.  They are nothing to be afraid of and they are actually very easy to use.  And if you feel that you aren’t sure of how to use them correctly, there are state and federal officials who get paid to enforce IDEA and FOIA.  That is their job.  They are not Flying Monkeys, THEY WORK FOR YOU.

Actually, everyone involved in your child’s education work for you, too.  Even Scarecrow, Tin Man, and The Cowardly Lion.  They are your employees.  YOU are The Wizard.

I finally learned that the IEP is my own legally binding magic wand and as The Wizard I write the goals that dictate the services my child receives.  If district and school staff are unable to execute programming that allows my child to access the general curriculum as outlined in her goals – separate goals for each core curriculum standard* – then I grab the bucket of water and pour.

There is no one to fight.  There never was.  I just needed to figure out that I AM THE WIZARD.

I. AM. THE. WIZARD.

And so are YOU, my friend. SO. ARE. YOU.

wizard

***

[*45 of 50 states have adopted Core Curriculum Standards and have/or are in the process of implementation. Individual states should have curriculum frameworks available on their education department websites, or for entertainment factor you can request the subject frameworks from your district BOE.  The very basic intent of IDEA is that every child, regardless of disability has ACCESS to the SAME curriculum as the general education population in ALL subject areas INCLUDING ARTS AND SCIENCES. Kids with autism deserve better than goals that are reflective only of basic human functioning - they deserve to experience the entirety of what this world has to offer.]


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