The perfect conditions for treating a patient with autism


Lutheran Hospital Fort Wayne, Indiana

I have long wanted to write a book for the medical community about how to deal with patients with autism. Our normal experiences with medical personnel as the twins were growing up, were less than admirable. Autism wasn’t known about as much as it is now. And I’m happy to report, after our experiences last Wednesday, that I have come up with the perfect formula for successfully treating a patient with autism.


Isaiah and a nurse

  • Order up a huge snowstorm. If you do that, the hospital will be overstaffed and there will be a minimum amount of patients because most of them will call in and reschedule their procedure. Because we were there when hardly anyone else was, Isaiah had plenty of nurses and attention.

A cozy nook I didn’t get to use. Oh well. Maybe next time.

  • Check into a cozy hotel. Because of the snowstorm we drove to Fort Wayne the night before so we wouldn’t be unable to get there for the procedure. Isaiah had worked himself up quite a bit, and delaying this would not have served him well. So we got to spend a “bonding” night together at a local hotel. Now, Isaiah is very familiar with staying at hotels because we travel a lot. For regular kids with autism not accustomed to travel, it would have been very stressful. It was actually stress-reducing for us because we didn’t have to rush around in the snow (we live about 45 minutes away from the hospital and the hotel was only about five minutes away).

A lovely breakfast buffet — alas, we couldn’t partake! (Isaiah wasn’t allowed to eat.)

  • Be prepared for blood-curdling screams. Because the room where they prepped Isaiah was almost empty, his howls when they put in the I.V. only scared about 1.5 patients. I checked, and no one ran away in terror, so that’s good. Plus, he had plenty of nurses to comfort him once the I.V. went in. He was spoiled big time because they were over-staffed.
  • Let the patient take lots of pictures of surgeons and doctors. Because it was a slow snow day, the doctors were very laid back and allowed us to stay with Isaiah in the procedure room until he was asleep! That never happens, as you know. They also took time to pose for pictures. They got to know Isaiah as a person. That can’t always happen in a busy hospital.

Isaiah with Dr. Ahmed. Isaiah becomes attached to those who are his doctors or caregivers. He wanted a picture with everyone.

  • Profusely thank all the nurses. In recovery Isaiah had six or seven nurses paying attention to him. He thanked each and every one. It was precious and he was the rock star of the day.

Isaiah shook hands with and thanked every single nurse.

As you can see, having your offspring with autism treated well, simply takes ordering up a mega-snowstorm from the weather guy or gal. No biggie. You can handle that. After all, you’re a parent with autism — you’re accustomed to serving up miracles.

Twitter-bird-medical2-187915small_640x320Tweet This: The perfect conditions for treating a patient with autism!

Hallelujah! We have poop!

hallelujahHey, when you live with autism, you get excited about some strange stuff.

This week I’m jumping for joy about poop.

I’m not saying that when Isaiah woke me up first thing Friday with — “Mom! I pooped in the hat!” that it’s my favorite way to wake up.

But let me tell you, it was a long-awaited event.


The Hat

Isaiah has been sick since October. We haven’t been able to figure out what’s going on. He’s been losing weight and his stools are very loose. He gets tired easy. The next step in pinning down a diagnosis was to get a stool sample. Which he refused to give us.

He’s eighteen. How do I force him to give me poop?

He was terrified of pooping in “the hat.” I called the nurse and asked for an alternative method. Nothing doing. It had to go in the hat and I had to scoop it out and put it in four different vials.


Weeks later there was still no poop.

We had an intervention. We sat him down and explained to him that he MUST poop in the hat. His twin brother told him that he wanted him to go back to school with him (he is in home-bound education until we clear this up).

I don’t know how, or why, but the next morning — HE DID IT!

And I had the pleasure of, er, collecting it.


So now we wait for news back. Hopefully it will reveal answers. Otherwise he has to have a endoscopy and if you know anything about autism, you know that it will be terrifying for him.

Here are some pics of his Grandma helping him endure another scan. He’s had three. Each time they have to put in an IV. And he’s terrified of them.

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How do you help your child with disabilities endure an illness? How do you cope?

Autism weekends


Weekends and autism are a challenge.

Weekends mean less structure. And Saturdays usually end up with the twins fighting.

Even though they’re 18, they still fight. Developmentally they are only about 8 or 9 years old. And I have to remember that.  Add autism to the mix and it’s just not the kind of dynamic that’s by any means “normal” for them. There is no normal in autism. There is no typical. Autism is unpredictable.


I’m trying out some apps to help us get more structure to our weekends and evenings. But being tech challenged (I’m not as bad as most but I’m no wizard) something has gone wrong with a wonderful app that was working.

Which teaches me another lesson: no matter how many bells and whistles I throw at this thing called autism, one thing will always, always be required:


If there’s one thing autism has taught me it’s how to prepare for the unexpected. The only way to do this is to remain flexible. Have more than one plan. And execute them one after another.

Sometimes it’s easy to fall into a pity pot and feel sorry for myself. I fight it but to be honest, sometimes it just happens.

Sometimes I’d like to know what it’s like to have a clean house for more than five minutes.

Sometimes I’d like to know what it’s like to ask them to do something and have them do it without constant coaxing.

Sometimes I’d like to be able to be spontaneous and just go to the movies with my husband without making elaborate arrangements for childcare.


But if I keep my focus on their humanity — their beautiful spirits, and realize that as hard as my days are with them, their days with me are just as hard if not harder.

I’m not the one living in the confusing world of autism.

They are.

And that’s when compassion overrides self pity and I can pull myself up and conquer another day.



Tweet This: Autism mamas are more flexible than contortionists.

Autism app: Chore Pad


This week will be our first week to try Chore Pad to keep track of chores. I will post a review of this app next week.

The twins are 18, but they have developmental delays and need help staying on task. I’m terrible about charts that hang on the fridge. Our lives are so busy that they either get forgotten or fall off. But the twins love their iPads and iPhones and when I stumbled upon this app I was tickled. I introduced it to them today and they already enjoy navigating it and bringing it to me to see what they’ve accomplished.

Chorepad1Description from the iTunes app store:

“Chore Pad HD is a powerful, fun tool for motivating your kids to complete chores. Each child completes their assigned chores to earn stars which are redeemable for rewards that you create! Give bonus stars for a job well done or penalty stars to let your child know they should strive to do better.

Chore Pad HD’s beautiful artwork is fully optimized for the iPad Retina Display. Check out Chore Pad on the iPhone and iPod touch for the same great features in a smaller form factor.”


It has won the following rewards:

Featured by Apple in *Education > New & Noteworthy* in over 20 countries.

148Apps Best App Ever Award
2012 – Won 1st Place in Parenting Category
2011 – Won 2nd Place in Parenting Category
2011 – Received an Honorable Mention in Teaching Category
“Chore Pad HD is fantastic for helping organize the family chores around the house.”
5 star rating and Golden App Award

Feature in top 100 favorite apps for 2011

Money and Kids: Teaching Kids to Earn Money

iPhone Life Magazine
Top pick for most used app by Leigh Shulman, September/October 2011 issue


Other important info:

Use a free Dropbox account to sync your data between all of your Chore Pad installations. Syncing happens automatically whenever you open or close Chore Pad, so keeping up to date with changes is effortless.

Each child has their own card showing their star and checkmark totals under their portrait. Tap a child’s card to show their Chore Chart, where chores are completed to earn stars. Give out bonus stars to acknowledge a job well done or penalty stars to show more effort may be needed. Flip cards over to show stats for today, this week, last week or two weeks ago.


Parent Mode keeps Chore Pad kid-friendly by tucking the important setup features safely away. Use Parent Mode to configure users, chores, rewards, syncing, passcode protection and more!

Your child earns stars as chores are completed, and uses those stars to redeem rewards that you’ve created! Watch happily as your child learns to save up their stars for long-term goals!

Completing chores unlocks trophies over time, which are displayed on each child’s card and in their Chore Chart. A trophy shelf for each child displays their earned trophies!

Each child can select their own theme for their Chore Chart, with nine currently available and more to come!


Create template chores that can be copied to any number of children and customized individually for each. Specify a wide range of repeat intervals, star values and select from dozens of available chore icons.

From the Developers:

We’re here to help! Please don’t hesitate to contact us with any questions, comments or suggestions.

Support Email:
Twitter: @chorepad




Tweet This: What do you use to keep track of your child’s chores?

 What do you use to keep track of your child’s chores? How much do you pay per chore? I am paying .50 per star. Is that too much or too little (keeping in mind developmental delays). I’d love your input!


When parents of disabled children kill


I hear it all the time.

A parent gets overwhelmed and they kill their child with a disability because one more day is just too much.

Kelli Stapleton, age 45 of Michigan, wrote on her blog, The Status Woe, in September:  “I have to admit that I’m suffering from a severe case of battle fatigue.”


It was on this blog that she vented about the challenges of raising her 14-year-old daughter, Isabelle, who has a diagnosis of autism and a history of violent outbursts. Something went wrong with her school program and it made things worse.

Why did something go wrong with the school program?

One of the reasons I want my degree in special education is because I have insight as a parent of special needs children.


When will the schools realize that SAMENESS is one of the most important factors in educating students with autism? Especially severe autism? And especially severe autism in the teen years?

Later that day, this Mom and her daughter were found unconscious from carbon monoxide poisoning  in a van in which charcoal was burned with the windows all closed. The child survived and Mom is now in jail awaiting trial.

muchpainI’m not condoning her actions. But I understand what it’s like to lose hope. It’s the worst feeling in the world. You can’t think straight after being pummeled by your child day in and day out with no end in sight. There just isn’t enough support for parents in this country. We love our children. We love having them with us in our home. But where is the support?

School is not enough.


Kelli’s friends are blogging for her now on her blog, and raising money for her legal fees.

Kelli’s Blog: The Status Woe

Fund Raiser: Friends of Kelli Stapleton

And a beautiful blog post about this situation is here: A Line in the Sand. It says so well all that I wanted to say here but couldn’t find the words as my heart breaks for this child and her mother.

Please read it. Even if you have no interest in special needs families. Read it and learn. There are hurting people out there and you just might be an answer to their prayer.




Tweet This: There isn’t enough support for parents of special needs kids in this country.

Christmas Eve traditions


Our family is weird.

But tradition is tradition and when you live with autism, you cling to a tradition that works like Velcro.

Here’s what we’re doing today (although, I admit I’m limited today due to my surgery recovery):

  • Frantically cleaning every corner and wrapping every forgotten gift we can find.
  • I usually cook all day but that won’t happen this year. So I’m going to be directing traffic in the kitchen.
  • The grandchildren will be here so it will be great fun watching them lick the bowls and decorate the cookies. I put out nativity scenes that are made for little hands and I love watching them play with them.
  • Around 4:00 PM, everyone cleans up, dresses up fancy, and gets ready to go to the church Christmas Eve Candlelight Service at 5 PM.

Origin-Christmas-candleAnd here’s where it gets weird.

  • After the service we go to Pizza Hut.


Yeah. I know. Not very dignified are we?

But this has been the tradition in this wee little town since we moved here 14 years ago. We discovered that Pizza Hut is rather empty on Christmas Eve and with two boys with autism, the peace there was perfect. We could feed the kids and grandkids to the gills and enjoy one another’s company. Sometimes if someone shows up to the Christmas Eve service with nowhere to go afterward, we invite them along.


Three of my seven granddaughters: Trinity Grace, Maggie Ellen Faith, Avery Hope

After we get home it’s time to open gifts from out-of-town relatives and friends, and the grandchildren open gifts from us before they go home. There are tons of cookies, egg nog, and other goodies to enjoy before sending them home to their own beds so they can wake up for their own family Christmases.

Do you have a strange family Christmas tradition you enjoy? I’d love to know about it!

Merry Christmas!



Autism, Christmas and Miracles


tumblr_my4e9nQE6g1r1vjs5o1_500Source: Facebook

I am home from the hospital recovering from surgery and I am not a very good patient. I whine, cry, moan and throw little fits.

In my defense, I am allergic to most pain medications. They make me so nauseous and dizzy I simply can’t take them. I’ve been dealing with recovering from a major surgery while on Tylenol. So, I think it’s safe to say others in my shoes may be as whiny as I. Or not.

On Saturday I was particularly blue. Very discouraged. Tired of feeling so badly. I was crying a lot. So Mr. Himself thought it was a good time to cheer me up with the gift the twins made for me at vocational school. Isn’t it gorgeous?


It’s made from 100-year-old barn wood.

I never dreamed my boys would be able to do such a thing. Of course, they had a lot of help and guidance from their shop teacher, but still. This table is an enormous symbol.

  • A symbol of how far they’ve come
  • A symbol of how much favor they find with teachers
  • A symbol of their undying, loyal, faithful love for family
  • A symbol of taking something scarred and making it beautiful.

This table will never leave me. Until the day I die, this is my Christmas table.

Young moms with autism out there — never stop hoping and dreaming. The twins have gone from severe to mild with a ton of work and a lot of help from others.


At vocational school. Isaac (L), Isaiah (R)

I am very grateful to the Lord for these beautiful boys. So very grateful to be their Mom.





Autism + Christmas = Nightmare

merry christmas sign

Let’s get something out of the way up front.

Autism and Christmas don’t mix.  (Tweet this.)

For so long I dreaded the holiday because of the stress it brought to our house. From the week prior to Thanksgiving until January 1, the tension in our home was through the roof. The screaming and tantrums were non-stop. I was covered head to toe in bruises.

Candy for Christmas Wallpaper

Looking back, I marvel at how we survived in the beginning when the twins were severe. Christmas was a nightmare for them when they were small.

After the first few years (they showed autistic symptoms as infants), we learned that we had to open our gifts without them because they screamed and banged their heads during the ceremony. For this idealistic mother who worked toward and longed for a Walton-family-style Christmas, this was devastating.


But the fact is, Christmas meant nothing to the twins but scary unpredictable change. Kids with autism long for sameness. It’s how they keep fear at bay. The fact that there was a tree–that belonged OUTSIDE– standing in the living room completely freaked them out.


Not to mention the people unwrapping the very gifts that for weeks they’d been told to leave alone. And then there’s the color red. There’s so much red.


Frankly, Christmas simply made no sense. And some of our traditions are kind of silly when you think about it. But that’s part of the “hidden curriculum” that people with autism struggle with. All those unwritten social rules that those of us without autism just “get.”


Thank God the twins eventually grew to accept Christmas and trees standing inside houses and fat guys in red suits.

Now, they are 18 and I’m happy to say that it’s a holiday they enjoy and look forward to. Christmas is still the most stressful time for them, and they do have more conflicts with us and their siblings (all adults now) during this time of the year. But it’s soooo much better than it used to be. They even look forward to watching their nieces open their gifts.


If you have a relative with a child with autism, don’t judge them. Be patient and offer to help. Give them hope. It can get better. And most likely it will. My guys who used to be self-injurious head bangers and biters (of themselves and each other) no longer hurt themselves this way at Christmas. Now they put themselves to bed early on Christmas Eve so they can get up early the next day.

And instead of screaming there are squeals.



There’s not a more pure spirit of Christmas than a soul with special needs grinning ear to ear after opening a simple gift. Even if its socks, the twins are thrilled. (And there’s always socks. It’s a tradition in our house.)

Really, when you think about it, every day that’s a good day with autism is like Christmas. I’m thankful we’re having more of those these days than we used to.

Here’s hoping you do, too.

14All images via Bing search of free use images.

Where is Avonte?

National Center for Missing & Exploited Children

National Center for Missing & Exploited Children

While the news focuses on the nightmare of Obamacare, there’s a much more urgent story that isn’t being told.

Avonte Oquendo, a 14-year-old autistic child is missing. He walked out of his school in Queens, New York 23 days ago and hasn’t been seen since.

His disappearance highlights several disturbing trends for families with autism in this country.

1. Public schools are often ill-equipped to truly understand the keen attention these children need.
autism ribbon
2. Public schools sometimes do a poor job of training and informing staff of the great importance of constant supervision of children with autism and other disabilities. Because these students often have trouble communicating verbally, every single person on staff of that school should have been informed or at the very least trained on how kids with autism do or do not communicate. One in 88 children in the U.S. have autism. 40% of them are non-verbal (National Autism Association).

3. Kids with autism are curious and prone to wandering. Why was Avonte not supervised more closely? According to the Interactive Autism Network and the Kennedy Krieger Institute, children with autism wander off at a rate four times higher than siblings without autism. As they grow older, they are at an increased risk for wandering off.

pastorswifeIn my book, The Pastor’s Wife Wears Biker Boots, one of the characters who has autism, Timmy, wanders off and gets lost. When I wrote about that, I had no idea how prevalent this habit is among children with autism.

That’s not to say I didn’t know they would wander. I have twins of my own, age 18, with autism. I’ve been blessed that their wandering hasn’t been too far. But they are insatiably curious, and I can find them in odd places sometimes.

My second son who has autistic characteristics wandered a lot as a toddler. He had no fear of anything. I had to put a bell on the door to keep him safe because he’d wander down the road and walk into people’s houses. One lady brought him home from the cemetery. Another saved him from getting lost in a corn field and crossing a busy highway.

5033250Please go to the Facebook page and share this flyer with your Facebook friends. Tweet about it.

And most of all, pray for this young man and his family.

Click to tweet:

Pray for missing child with autism: Avonte Oquendo.

Help find Avonte. Retweet.

Help find non-verbal missing child Avonte!