Down Syndrome with a Slice of Autism
Just another WordPress.com site, Here to help you navigate co-occurring Down syndrome and autism. Nick is 29 years old and has DS-ASD. This is Nick's world, the rest of us are just trying to keep up!
Thank you for reading and sharing Nick’s world this year. Have a Merry Christmas and we wish you a Happy New Year! Enjoy your holiday with family and friends.
I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime. We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism. See you next year (that never gets old does it?) 🙂
Cheers,
~Teresa
Blog #78~Christmas Past
This week; a look at Christmas past with Nick and his older brother, Hank. Having a brother with Down syndrome and autism requires patience and understanding. It’s not always easy with Nick yelling, dropping things, stimming and giving us all a run for our money. I give Hank a lot of props for putting up with it all these years. Here are some of their special times together at Christmas.
Christmas in Texas, no pants required 🙂 
Family gathering back at my parent’s home. I love Nick’s toothless grin! 
Christmas at GMA Theresa and GPA Jim’s house in Chicago. Here’s Nick with his cousins Anna and Sam. Looks like Nick got a new musical toy 🙂
Christmas and Bears game time!
They’re getting bigger!
My high school boys…..
I hope that you enjoyed a look back at Christmas past. I treasure the many fond memories of my boys over the years. May your Christmas be filled with joy, love and peace.
~Teresa 🙂
Blog#77~Autism and Meltdowns
I would rather write about anything else than what an autism meltdown looks like (even poop accidents).
It’s a difficult subject, personal in nature and exposes a lot of vulnerability. I am just one of so many dealing with these raging outbursts. My son Nick is 19 years old and has Down syndrome and autism. So, for all of the warrior moms out there in the battlefield…. This one is for you!
When Nick was in the throes of puberty, his meltdowns were horrific. He would destroy everything in his path. His arms slung hard hitting, kicking, biting and drawing blood with his pinching. These intense battles became so bad and frequent that I had to take action. I was no longer able to control my own son. Here is what I did……
Three things we did to get things under control:
1. Nick was put on medication, Risperdal to help calm him down and be less agitated.
2. I called an emergency IEP meeting and insisted that the school district’s autism specialist be brought in to help out. We tracked his behavior both at school and home to figure out what might be triggering his anger. Then we came up with a behavior plan. You see, every behavior communicates something. In Nick’s case, he wasn’t being heard.
3. The autism specialist determined that the staff, Nick and I needed to be properly trained to use the picture exchange system (PECS). The pictures gave Nick a voice that autism had robbed him of. Finally, he felt in control. The incidences of the teenage sized temper tantrum quickly diminished.
PECS Communication Book:
Fast forward to the present….. Nick has been unsettled. He is expressing it by shoving us away. It’s like he is saying, “Hey, I am 19 years old and coming into adult age. Back the F#&K off!” Nick had two serious meltdowns in the past week. Each seemed to come out of nowhere. But there is always something brewing inside. You just have to back track and figure out what might have been the trigger(s) to set him off.
Portrait of an Autism Meltdown: The Scenario, Triggers and Outcome
(Also known as the ABC’s: Antecedent-Behavior-Consequence) Here’s a sample form used to work on a Behavior Support Plan………
Timeline of Nick’s Meltdown
A=Antecedents:
*Routine is off the past couple of weeks Nick’s Dad had shoulder surgery=added stress around the house.
*Nick has a runny nose and woke up way too early.
*Dinner at Nick’s Aunt & Uncle’s recently purchased home-new environment
*Al pulls into his brother’s driveway and has to back up a few times. Nick hates it when you pull in and then have back up. He thinks you aren’t going to stay so he panics, bangs on the window, pinches his cheeks and yells loudly.
*Nick’s bored and no one is paying attention to him. He looks to stir things up. He sits down on the couch with his iPod, but doesn’t last there long. He finds my purse and empties the contents it down the stairs. Then, he bonks poor Cali on the head with the can of tennis balls he is stimming on.
Poor Cali, retreats to the kitchen…….
*Aunt Ali makes Nick’s favorite pasta dish, and has bought his favorite dessert. 🙂
*Oh no, I realize that once the Little Debbies are introduced Nick’s going to make a bee line to the shower. That’s his routine.
*Sure enough, he strips down in the bathroom upstairs. The water doesn’t get as hot as Nick likes…. NOT GOOD, this is going to make him mad.
B=Behavior:
*He shivers and is pissed as I help him towel off. I hand him his street clothes to put back on. (I should have brought his pajamas.) He flung them across the bathroom, then he proceeded to grab the tissue box, toothpaste, magazines, hand towel and hurl them as well. THIS IS IT…….
*I managed to contain him between the toilet and bathtub and shield myself as he lunges at me pinching, bruising and scratching my arms. I use a towel much like a bullfighter does against a raging bull. Only I am the one who becomes bloodied, not the bull.
*Nick is nearly my size. There is no possible way to do *CPI Holds (see link below) on him anymore. It’s more about getting him in a safe place and deflecting his blows.
It took 30+ minutes for Nick to de-compress from this meltdown, (most are 10-15 max these days). I felt raw, defeated and exposed. Nick started to work through his emotions. He cursed, hit and pinched himself as if he was replaying the meltdown. My heart breaks a thousand times in these moments.
Consequence:
Eventually Nick showed remorse and said, “sorry”. That’s when you know he has de-escalated. He put on his clothes, said our apologies and drove home in silence.
THAT is a portrait of an autism meltdown!
The next morning, I brewed a K-cup and began to dissect what had happened to cause the meltdown. Nick thrives best in a predictable environment and visual picture schedule that he can follow.
So, I go back to the ABC Functional Behavior form:
A=Antecedent (what happened before)? All the things listed above were building up inside him.
B=Behavior (Nick’s tired, confused, mad at the cold water and no pj’s, he lashes out.)
C=Consequence (After the meltdown, Nick de-escalates and apologizes and we go home.)
I’m still trying to figure out Nick’s world. In retrospect, I should have increased his med dose before the dinner and made a visual schedule with pictures of their new home. On the schedule put the following icons on:
“New house”
“Dinner”
“Dessert”
“All Done”
“Car”
“Home”
Or at the very least, just brought his pajamas. So, I will re-boot and learn from this mistake just as I’ve done before. Autism and meltdowns can be scary and brutal. But they can also be prevented if you look ahead to the environment, and plan ahead for anything that might set your child off.
That’s what is in my noggin this week.
~Teresa
*CPI= “Crisis Prevention Institute offers trainings in “Nonviolent Crisis Intervention.” The program is safe, nonharmful behavior management system designed to help humans service professionals provide the best possible care, welfare, safety and security of disruptive, assaultive and out-of control individuals even during their most violent moments” For more Information: http://www.crisisprevention.com.
Blog #76~ Social Skills and Autism
A few weeks ago I did a guest lecture at Northern Illinois University. The graduate level class topic was “Functional Communication Skills and Social Skills” from a parent perspective.
NIU at WCC Sugar Grove Campus
Blog #73 covered the topic of communication skills as it relates to autism. This week I will cover how to incorporate social skills for individuals with autism. Nick has Down syndrome and autism. It makes for an interesting mix because his verbal speech is lacking, yet he is very outgoing.
Here some of the ways in which his teachers have incorporated opportunities to practice social skills:
*Lunch bunch groups in school-play board games, practice turn taking, boundaries.
*Community outings to grocery store, library, mall, and eating out.
*School and community jobs
*Practice self-regulation through his behavior plan. Work in a controlled setting on what triggers his outbursts.
*Social Groups tailored for kids/teens with autism
*Best Buddies Program- monthly meetings, parties, bowling, movies, dances, etc…
Nick trying a hat at Jewel Osco Grocery Store 🙂 ………..
All of these opportunities have helped Nick to behave more appropriately when out in the public. When Nick was in middle school he went to each classroom and emptied the recycling bins. He was able to practice greeting students. At the end of the semester, the students made thank you card for Nick: 
Having peer role models is very valuable in this process. At his recent school conference his teacher commented that Nick was quite “restaurant savvy.”
Nick’s all aboard for lunch with his classmates 🙂
Children and teens with autism can benefit in participating in social skills groups. These groups have not been a fit for Nick because he lacks the verbal skills. They tend to be suited for higher functioning persons with autism who have speech. Check with community autism support groups, speech therapy clinics and schools to find a one in your area.
Here is a sampling of topics that might be covered in a social group for individuals with autism:
*Interventions for hitting/biting and conflict resolution
*Handling transitions
*Asking friends to play and what to do if they don’t want to play with you.
*Turn taking in general conversation.
*Facilitating cooperative play- taking turns, practicing patience coping with losing a game
*Dealing with large crowds, busy settings and stimulus overload.
*Initiating a variety of conversational topics – Sometimes intense, restricted interests result in sticking with only their preferred topics (like dinosaurs, academy award winning movies, etc..)
*Working on conversations that reciprocate the interests of others in the group.
*Providing needed information based on a partner’s knowledge of the topic – Gauging length of conversational turn and working on noticing the cues others send us so we can adjust the length of our conversational turn.
Currently, Nick participates in the post-secondary transition program. His schedule includes community trips to the store, library, mall walking, cooking, vocational jobs and move and groove (dance party) along with the regular curriculum. The STEPS program also has dances and recreational trips after school from time to time. As you can see, there are many occasions built in his schedule to practice social skills. It is essential to keep Nick’s world open and provide opportunities to socialize.
This past weekend his brother came home from college. I found it touching that Nick wanted to hang out upstairs in Hank’s room a lot of the time he was here.
Nick with his brother a few years back…..
Having a child with autism doesn’t mean you have to close yourself off to the world. Look for ways to get out there and mingle. That’s what is in my noggin this week! 🙂
~Teresa
Down Syndrome with a Slice of Autism 