Down Syndrome with a Slice of Autism
Just another WordPress.com site, Here to help you navigate co-occurring Down syndrome and autism. My son, Nick is 30 years old and living his best life as an adult with DS-ASD.
Wandering & Autism Part II
In part II of Wandering and Autism, I’ve provided more safety information, links for monitoring and GPS tracking devices for individuals who have autism and wander.
Click on the link to view:
@https://nickspecialneeds.wordpress.com/2013/07/29/blog-62wanderi…autism-part-ii/
That’s what is in my noggin this week.
~Teresa
Wandering and Autism
Spring is here, the flowers are blooming, and everyone wants to get outdoors. Do you know a child who is an eloper? My son, Nick who has Down syndrome and autism and he has wandered off. It’s a parent’s worst nightmare. Here are some action steps you should take to insure their safety @https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/
Deck time, Nick and his stim objects…..
Thank you for reading and sharing this critical information about wandering and autism. That’s what is in my noggin this week.
~Teresa 🙂
Autism and Meltdowns
April is Autism Awareness Month. This week I want to focus on autism and meltdowns. Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you. Nick at the time was 19 years old. He has Down syndrome and autism. This will give you an idea of the triggers and behaviors that can occur during a meltdown. It will also show you what I learned to try and prevent this in the future.
Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/
That’s what is in my noggin this week. Thank you for reading and sharing the reality of autism.
~Teresa
Parent Tips for Better IEP Meetings
It’s that time of year when parents hold their breath in anticipation of IEP meetings. IEP stands for “Individualized Education Plan”. An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year.
Many parents dread these meetings. I was one of those parents who did for many years. But after 21 years I’ve learned a few things on how to make these both productive and cooperative. My son, Nick has Down syndrome and autism. Here are some parent tips for better IEP meetings:
https://nickspecialneeds.wordpress.com/2014/03/17/blog-88-parent…r-iep-meetings/
Thank you for reading and sharing Nick’s world. That’s what is in my noggin this week!
~Teresa
Blog #117~Autism and Aging Out of the School System
Last night, NBC’s Dateline featured a special called, “On the Brink”. For three years they followed two families with young adults having autism. Both were aging out of the school system (and losing specialized help). Click here for a preview:
http://www.nbcnews.com/dateline/video/preview-on-the-brink-425150531817
According to the nbcnews.com article, “Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they’ve had for most of their lives. And there is no equivalent state or federal support required to take over.”
I understand their situations all too well. My son, Nick is 21 years old and has both Down syndrome and autism. He will age out of the school system here in Illinois next year. I got a lump in my throat and tears streamed, when Dateline showed the school bus pulling up for the last time. For Nick, that day will happen in less than 9 months on the eve of his 22nd birthday.
According to the NBC.com news article, “Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.”
One mother said on the Dateline special, “You don’t outgrow autism. There is a tsunami of children who are aging out and moving to adult life.” Both of the families encountered struggles to find resources, funding and programs for their sons with autism when they turned 21 years old. Resources are limited for adults aging with autism.
For more on their stories click here:
http://www.nbcnews.com/news/us-news/you-dont-outgrow-autism-what-happens-when-help-ends-21-n340066
The Dateline special has ignited me to pick up the phone and make those calls to the adult day programs we have earmarked with Nick’s IEP team. The STEPS (post-secondary transition) program goal is to insure a seamless transition from the day the yellow bus stops coming to the door to adult life. Nick will continue to need constant supervision and care 24/7 after he finishes at STEPS.
My job is to find the right fit, whether it is a workshop or day program that is more community based. Nick needs structure and meaningful activities in his day. Otherwise he will regress. We have a leg up with the funding in place. Nick is already on the waiver with the Department of Human Resources which pays for respite care. In addition, Nick receives Supplemental Security Income (SSI).
Stay tuned as we ride the tsunami wave alongside the other warrior parents struggling with autism and the limited funding and services. That’s what is in my noggin this week.
~Teresa
Blog #116~ A New Talker for Nick
Nick has a new talker! The SETT meeting team looked at Nick’s needs as a student along with his environment, tasks he does and what tools would be needed to help him effectively communicate. Nick is using an iPad with the Touch Chat program. This Augmentative and Alternative Communication device (AAC), is bigger and the buttons are much easier to push. It has more keys on the home page making it easier for him to navigate. Each team member went through a training orientation on the device to learn how to sift through the keyboard and customize it to suit Nick’s particular needs. Nick is 21 years old and has Down syndrome and autism.
Nick’s new AAC Device….
Nick’s speech therapist introduced the device at school. He was very excited along with his peers during group. The first thing they did was to take a “selfie” of Nick (and he pressed the button) to add his photo to the personal page. This page also includes his age, the town he lives in and that he has a cat named Kibbie and assisted in getting Nick to “buy in”.
Kibbie 🙂
At home, Nick navigated through the keyboard very well. Here are some of the requests and comments he made:
*Nick pushed pulled out juice box and requested juice on talker
*Nick pushed “baseball” and walked to cabinet where they were pointing (wanting his can of tennis balls)
*Nick pushed “tired” before laid down for a nap
*Nick pushed “salami and cheese”, after nap and then pushed “soda”
*Nick pushed “salad” “mashed potatoes” as he unloaded dishwasher
*Nick pushed “phone” after his dad got off the phone to his parents and pushed Grandpa/Grandma
*Nick pushed “bathroom, shave, shower” while waiting for dinner
*Nick pushed “dessert”-Cake after dinner
We are off to a good start with Nick using the AAC device. The iAdapter case is pretty rugged, Nick’s already thrown it a few times (shocker right). However the stand that props it up has broken after taking a few hits. When he is in a throwing mood, I tuck the device out of sight so it won’t be damaged further. One thing I noticed right away was how territorial he was with it. He also found his way through the keyboard better than I thought he would. At one point he pushed the category called “Groups”. Then, he hit “Jobs” and found the “Firefighter” button which he hit a dozen times. You can view a video of this on the Facebook page: Down Syndrome with a Slice of Autism. By the way, why is there a “Pirate” is a button in the “jobs” category? 🙂
Nick fell asleep with it on the couch the first night….
Stay tuned for more about Nick’s communication device. That’s what is in my noggin this week. 🙂
~Teresa
Blog #114~SETT in Motion
Last week, I wrote about the process of a SETT meeting. Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate with. This is called an Augmentative and Alternative Communication (AAC) Device. Nick is 21 years old and has Down syndrome and autism. The SETT meeting allows for team members to provide their unique perspectives of Nick. The members included:
*Support teacher/Case Manager
*Speech and Occupational therapists
*Teaching assistant
*Parent
*Private speech therapist
*School District AT Specialist/Facilitator
These team members did a brain storming session about Nick, including his abilities, needs and concerns. Here is a re-cap of the meeting notes and will put a lens on what Nick is like:
Student: Nick U.
*Comedian
*Likes to get reactions from people
*Wants to communicate
*Uses many modalities to communicate
*Has been talking more
*Holidays were stressful
*Old behaviors have resurfaced, but starting to
decrease again
*Thrives on routine
*Good at following directions
*Good worker
*Knows how to follow sequence of steps at jobs
*Wants to please
*Teases
*Visual schedule helps decrease his anxiety
*Gets frustrated when told “no”, if he’s not doing
something right, or if his AAC device is not
working
*Gets frustrated if he has difficulty manipulating
items
*Frustrated if he feels he isn’t being heard
*Changes in routine can be difficult
*Needs to understand why things are happening
*Goals at school include: requesting a break,
paying routine, cooking, grooming, commenting,
protesting
*Working on commenting about food and videos
with private SLP
*Loves cooking
*Fake coughs on people and replicates sneezes to
get a reaction
*Trying to shape his sense of humor into more
appropriate behaviors
*Swipes things off the desk
*Prefers adult interactions
*Has some preferred peers
*Babies crying is a trigger for a meltdown – he
picks up on the emotion
*He’s a flirt – elbow bump
*Strong receptive language
*Likes to dance
*Great at sorting
*Does chores at home – dishwasher
*Has an older brother
* Loves community trips
*Taco Bell and movies with the respite worker
*Gets right out of bed on community days
*Very aware of his environments, especially fire
alarms
*Always scanning and scoping out the
environment
*Impulsive
*Likes loud buzzing noises (ex: lift buses,
microwave)
*Seeks sensory input – auditory input, likes to
watch things get poured
*Uses items to tap on his chin
*Loves music – big motivator
*Knows vocabulary on his talker when he’s
motivated
*Used AAC device to order his meal, Sprite
This should give you a sense of Nick’s attributes. Exploring a student’s abilities, needs and concerns is the first step in getting things in motion when looking at a communication device.
Next week, I will share the rest of the meeting notes which looks at his environment, tasks we want him to communicate, and what tools will be needed in a device that will be successful for Nick to use. That’s what is in my noggin this week. 🙂
~Teresa
Blog #113~Ready, SETT, Go!
Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate with. This is called an Augmentative and Alternative Communication device (AAC). Nick is 21 years old and has Down syndrome and autism.
Nick with his private speech therapist…..
SETT is an acronym for Student, Environment, Task and Tools. The team gathers to ask key questions and get information that will help to pinpoint what technologies would best suit the student. Here are the areas the team looks at in a SETT meeting:
STUDENT
*What are the student’s current abilities?
*What are the student’s special needs?
*What are the functional areas of concern?
*What are the other students doing that this student needs to be able to do?
*What does the student need to be able to do that is difficult or impossible to accomplish independently at this time?
ENVIRONMENTS
*What activities take place in the environment?
*Where will the student participate—classroom, home, community, therapy?
*What is the physical arrangement?
*What activities do other students do that this student cannot currently participate in?
*What assistive technology does the student have access to or currently use?
TASKS
*What specific tasks occur in the environment?
*What activities are the student expected to do?
*What does success look like?
TOOLS
*Are the tools being considered on a continuum from no/low to high-tech?
*Are the tools student centered and task oriented and reflect the student’s current needs?
*Are tools being considered because of their features that are needed rather than brand names?
*What is the cognitive load required by the student to use the tool?
*What are the training requirements for the student, family and staff?
The SETT meeting allows for team members to provide their unique perspectives of Nick. The members included:
*Support teacher/Case Manager
*Speech and Occupational therapists
*Teaching assistant
*Parent
*Private speech therapist
*School District AT Specialist/Facilitator
The brainstorming session is recorded on butcher paper. At the end of the meeting each team member puts a star on the three most important aspects of the communication device for Nick:
The AT Specialist gathers up all the butcher paper and compiles the notes to share with the team. These notes enable the AT Specialist to hone in on what devices and speech programs would best suit Nick’s needs. The SETT meeting catches all the ideas of the team and guides them to make informed decisions regarding technologies for the student. Next week, I will share the compiled notes so you get a sense of Nick’s learning style, what motivates and what works best for him. That’s what is in my noggin this week. 🙂
~Teresa
Nick’s 21st Birthday
Big Guy turned 21 this past Saturday. We threw a party and Nick had a blast. Here are a few snapshots of the day:
Party favors…..Theme red solo cups and Thomas the Tank engine, only in Nick’s world!
I made a toast thanking caregivers, therapists, family and friends for their support with Nick (who has Down syndrome and autism) over the years. Nick followed it up by flashing the crowd. Looks like we have some new members added to the “belly flashing club”. 🙂
Chocolate cake, Nick’s favorite…..
New sensory toys from his occupational therapist…..
Cheers and down the hatch! Don’t worry, he didn’t slam the whole thing. Nick’s brother Hank, handed him the last half of his beer. 🙂
It was a great celebration. We are very appreciative of the generosity from our family and friends. Thank you for all the well wishes and touching sentiments. That’s what is in my noggin this week!
~Teresa
Blog #112 Regression of Behaviors
Christmas 2014 was anything but merry. The swimsuits, flip flops, suntan lotion and pool toys sat in a pile on the chasse in my bedroom. We never made it to the Florida Keys for our vacation. A member of our extended family came down with pneumonia and then a snowball effect of more health problems that included a 12 day stay in the hospital. Nick wasn’t sure what to make of things. He is 20 years old and has Down syndrome and autism. All he saw was his Dad or me taking off all day on hospital visits which were an hour away. Nick picked up on the fact that something was very wrong. He was sad and angry and missed being with the extended family. We spent that two week break unsure of the outcome and shooting from the hip. In 20 years of raising Nick, I have NEVER seen such a spike in regressive behaviors.
When daily routines are interrupted a child with autism can feel anxious and behaviors regress. Strict routines, normalized school or work schedules without any unexpected occurrences enable a child with autism to progress best. However, because the holidays are busy, stressful and filled with the hustle and bustle of foods, gifts, and family; a parent can expect to see behavioral changes.
Back to Nick and those behaviors that spiked, which included the following:
*Increased stimming with objects and louder vocal stimming
*Pushing microwave fan, phone intercom and now house alarm system much more
*Throwing objects and dumping things like a one man wrecking crew.
*Spitting and rubbing snot on flat screen TV, windows, on our clothing.
*Squirting liquid soap in his eyes, rubbing lotion all over himself
*Multiple, violent meltdowns
*Peeing his pants several times
And to top it off, I left a bottle of Febreeze out by accident………Oh nooooooo!
FYI, Febreeze and a flat screen TV don’t mix well. So, we had to purchase a new one……..
By the way if you Google search “Febreeze on a flat screen TV” there are several entries of other kids doing this. Nice to know we’re not alone. 🙂
I reported all of this in the school/home communication book. The school staff wrote back that Nick was definitely not himself. He was trying to pull fire alarms, pinching his cheeks hard as well as a staff member. To make matters worse, just as Nick was back in his school routine we had two snow days. On top of that, the kids were off two more for the end of semester and MLK Day. Oh, and there was a full moon over the holiday break.
The house is quiet now, and I can focus on writing again. Yesterday, I did a little research on regression of behaviors and holiday breaks. As I reflect on Christmas 2014, a couple of things stand out. First of all, Nick’s behavior was magnified because his parents emotional fatigue and lack of emotional availability. For over two weeks we were back and forth at the hospital. Nick picked up on the stress. Secondly, as a family we should have communicated in private about medical updates. I think back on one particular day. As I briefed Al on the hospital visit, Nick came over crying and wanted a hug. I had to remind myself that he understands much more of what we are talking about. He also picks up on the negative vibes of conversations. Finally, one tip I read in my research was so obvious. But when you are in the thick of things it can be overlooked. That is, don’t let your kids be aimless. It’s essential to find ways for them to occupy your child. When kids are on a school break, they have less structure in their day. Bottom line, they’re going to get into more trouble and conflict because they have the opportunity to do so.
While there was no kayaking, bike rides, beach and pool time or key lime pie over Christmas we did make it through. Things are slowly on the mend. The cousin’s presents and white elephant gifts are tucked away for now. The Hormel Cure 81 Ham sits in the refrigerator awaiting a belated Christmas celebration at a later date. The gift of Christmas 2014 is being reminded of how precious life is and how quickly it can be taken away. In addition, I have a new perspective of how important it is to respect Nick’s needs when there is a school holiday break. That’s what is in my noggin this week.
~Teresa
Down Syndrome with a Slice of Autism 