Part 2: A Few Nuggets from the New Best-selling Book by Robert F. Kennedy Jr.
UK Protects Healthcare Industry

The Going Out Edit - Autism Edition

Lingoby Cathy Jameson

I don’t know much about marketing, but I do know that fancy words in ads can help make a bigger sale.  I thought about that when I saw a phrase I didn’t recognize: The Going Out Edit.  I knew it had something to do with fashion, maybe even high fashion.  But that was it.  Whatever it was included a dollar sign. 

Sometimes the new teen/young adult lingo goes right over my head.  In case one of my kids began to use the phrase, I wanted to check it out and see what it meant.  Sure enough, it's the things you wear, the accessories you bring, or the stuff you add on to your outfit.  From Cotton:On

The Going Out Edit

A calendar full of social plans, parties and reasons to dress up again. Think little black dresses, tops, cute crops and pants that pair perfectly with your heels. Jeans? Absolutely. Whether you’re going out with the girls, hitting the dancefloor or after-work drinks, these new outfits were made to be seen in. Bodycon dress? A statement co-ord set? A halter top and jeans for that classic ‘jeans and a nice top’ look? Real big vibes. Refresh your wardrobe, grab your clutch—we’re going out.

I'm not into fashion at all these days.  Actually, I never really have been.  While shopping before my kids were born, if a dress, shirt or pair of pants fit me, and if the price was right, I'd get it.  I still buy clothes that way now, including when I'm at thrift stores (which is my favorite place to shop).  I was looking at an online retail site for a few things when I saw a section that had that The Going Out Edit title.  Before I saw the photo under it, I immediately thought of Ronan.  Could edit mean what we bring along with us when we leave the house? I wondered.  We just call that stuff.  "Get your stuff, kids.  Bring Ronan's, too," is what I yell as we're trying to get out the door on our way out.  

That's exactly what I said when we left the house last Saturday.  

One by one, the kids pig piled into the car.  Dressed up that late afternoon because after a haircut for Ronan's little brother, we'd be heading to Mass.  The girls were in dresses and wore nice necklaces.  Their purses “completed” the outfit.  Their brothers were in their khaki pants and had nice shirts on.  I was wearing one of my "mom" outfits.  As much as I'd love to dress up for church, if Ronan is coming with us, I need to wear pants and flats.  Too many times, when he was much younger, I learned that I needed to wear sensible clothing to places he may not want to stay.  Carrying him, sometimes by piggyback, while wearing a dress can be difficult.  It can also be embarrassing. 

We always hope he'll want to stay wherever we go, but it's easier to 'exit stage left' in clothes that are comfortable. 

Something else that makes things easier for him, and therefore for us, is to bring Ronan's stuff, which I guess is what his Going Out Edit would be.  He must be ahead of the trend because we've always carried a bag with us whenever he goes out.  It doesn't matter if it's to the store, a doctor's appointment, or when he joins me to pick up siblings from school.  A bag, or his Going Out Edit if we want to make it sound a bit upscale, must come with us.  

What's in it?  That's changed over the years, but now it must have: 

a diaper

a pull up

a small bag of baby wipes

a small snack

his favorite book and picture

the iPad and charger cord

his wallet

his emergency seizure medication

his Guardianship documents, papers I never thought I'd have to bring but go with me everywhere he goes when he's with me

There's nothing fashionable about any of that stuff, but every single thing in his bag is important.  When we have them, life is easier…or at least more manageable.  If I leave one thing behind, I worry that I'm going to need it.  That happened years ago when Ronan had grand mal seizures in the car.  He needed it, but I’d forgotten to bring his emergency medication with me. 

Since then, every time we head out now, the bag goes with us.  

Hanging on a hook in the front closet, it's become second nature to grab it.  It came with us on our outing last weekend and, as usual, served a great purpose.  Ronan needed that favorite book and his favorite picture 25 minutes into Mass last Saturday night.  

He'd already done a really great job sitting through the haircut.  While it wasn't his turn for a trim, he followed the well-established routine his brother and my husband have taught him when they go to the barber.  The barber is always welcoming and is more than accommodating to my son.  Ronan knows she keeps a secret stash of candy, which he never gets anywhere else, also helps.  I know that candy may not be the most nutritious reinforcement.  But in those moments when nothing else worked to get him in the door, in the chair, and then to tolerate the clipping and the buzzing and the extra noise in her barbershop, it helps. 

Ronan can now sit through a professional haircut every other month like a champ.  

Like last time he was there, we also headed to church immediately after the appointment.  I’m glad we did because, like last time, Ronan stayed for the entire Mass!  It isn’t our home parish that we go to on those days, but we’ve been going there often enough over the last 2 years that Ronan recognizes it.  Recognizing the church and the expectations of being there is great.  What’s even better is when the routine we ask him to follow goes smoothly.  Like the last time we all went, staying for the entire Mass wasn’t easy, though. 

That’s when the strategies, and Ronan’s stuff, comes into play. 

It’s always around the Gospel that Ronan wants to leave.  With his black fish, the page of the cat image opened, awkward hugs given to little brother, plus little brother’s gentle directions, I’m happy to share that Ronan made it through!  You know that means we all made it through Mass, too.  

Cj 22 1

Cj 22 2
Cj 22 3

Ronan got a little antsy after I received communion, so I quickly set a timer on my phone.  We had less then 10 minutes left at that point.  Something I prayed he’d be able to tolerate.  Again, with one more awkward hug, we walked out after the recessional hymn was sung.  Success! 

I ask so much of the siblings, but they continue to give no matter the situation.   

Ronan is very much a part of their every-day life now.  That means the siblings can still help him, not just because they’re capable but because they want to.  Like me, they celebrate the little things with him because they bring huge victories for all of us.  Just walking out the door can be a showstopper.  Having all of the items we need in that bag of Ronan’s, plus some positive attitudes, has been key.  That all allows him to continue to try, try again. 

I know that my kids’ paths are not always going to include living with us or caring for Ronan on a daily basis, so I’ll cherish these little moments now.  Those moments, along with all the knowledge we’ve gained along the way, can bring us such joy.  They can provide a sense of peace in our hearts as well. 

Cathy Jameson is a Contributing Editor for Age of Autism.



Thanks Cathy for sharing your experience with your kids. It was also interesting to see the pictures you shared with your story. While discussing on this topic I want to mention a site here that goes by smallstepsbd and it treats and helps people who diagnose with autism and its mission is to making our society least challenging and more acceptable for Autistic children.

MaryAnne Oller

Thank you Cathy for sharing. What a beautiful picture of all of you in Mass. I pray that He will keep you and yours and bless you always.

Benedetta Stilwell

Cathy; You are about the strongest person I know in my entire life.
Getting all those children dressed up as cute as can be., plus a tote for Ronan is a very important part of your life that I am so glad you have decided not to miss out on.

I just had two to get ready for church, and the one daughter make life miserable for years. She really fought getting dressed, getting up, getting ready till this very day I feel traumatized about church.

It Makes me tired to think of it. However the people that I got to know in our community made it well worth it, and I have very fond memories of all of them to this day. I miss them. We moved away, but they were very important in our lives. .

Jeannette Bishop

Thanks, Cathy. IMO, that's a little better "edit," being prepared for emergencies, managing the quality of the life given your son, etc! Fashion? So hard to remember what it was like to sort of care about that...

On a broader application, being a member of a church that focuses some on emergency preparation (1-2 years food storage, 2 weeks water storage, 72 hour emergency kits, kits you can grab and go with if needed, life skills education, etc), I've been tuned into and disturbed by the denigration, making unfashionable essentially, in the past few decades of preparing for tough times. I've decided that's because a prepared population is something that weakens the position of would be tyrants to be empowered in the name of "helping us" and increases our freedom to oppose corruption. (It may a little easier to not go along with something like a vaccine mandate for instance, or murder protocols in a hospital, if you know your family's essentials are provided for during a change of jobs, etc). Legislation at one point under Obama that tried to criminalize some of these practices was opposed by Sen. Paul in part by him being able to point out that you would have to arrest half the state of Utah as terrorists, maybe a blessing to more than just that state? Watching the increase in disaster capitalism and the newer technologies they've developed (to the broadening of the nation's debt, a debt they now want to dump on our heads while they run off with all the tech, that is transfer it to private/corporate hands/the financial investors) to pull off what some would think are "acts of God", I think a lot of the desired oppression and desired power grabs are hindered and sometimes prevented by the lessened ability to bring a population to its knees (to them... hindered all the more if we kneel to God instead for his help).

Most of the time I feel the autism epidemic has been a largely unheeded warning to society. Other times I wonder if there are elements of crunch-time training in it for some of us (something I'm pretty bad at still despite all my "training") and I admire what you and so many still accomplish with your families and your communities! You keep love at the heart of things under all duress, something that looks more and more essential for going forward today.

Andrew Foss

You had me laughing along with you on this one.

For haircuts though, we learned to do that at home. Even then we were always afraid a a CYS call from the neighbors. At age 15 now, he has learned to enjoy the haircut game. But that only came after years of screaming.

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