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.
Topics related to characteristics and information related to having Down syndrom including health, self-care and leisure activities also included in this subject area.
This week, a re-blog of #75 that I wrote last November: 5 Reasons I Am Thankful For Nick (who is 20 years old and has Down syndrome and autism). Click right here @https://nickspecialneeds.wordpress.com/2013/11/25/blog-755-reaso…nkful-for-nick/
Thank you for reading and sharing Nick’s world. Wishing you all a blessed Thanksgiving. 🙂
~Teresa
Blog #109~ A Good Day with Autism
This week I am sharing a chapter of the memoir which I’ve been working on about raising Nick. This incident happened back in 2009. He is now 20 years old and has Down syndrome and autism. This is for all the warrior moms and dads out their battling it out on the front lines……….
A Good Day with Autism
(A chapter from the memoir about raising Nick, by Teresa Unnerstall)
“Autism Speaks. It also flaps, tics, hums, snorts, grunts, yells and sings.” My friend, Amy posted this on Facebook recently. I clicked the “like button” and chime in my two cents. “And it also hits, kicks, pinches, drops, rocks and bops.” Today was no exception. My son hit most of the marks. Nick is seventeen years old and has a dual diagnosis of Down syndrome and autism. He has his good and bad days. Here’s a look at living with autism.
The bell goes off on the alarm promptly at six o’clock a.m. Like a typical teenager, Nick needs nudging. The morning routine moves like a conveyor belt. His clothes are laid out the night before along with a plastic bin containing his hair gel, deodorant and body spray. He eats a simple breakfast while I prepare his lunch. It is essential to keep things in order to set the tone for the day. I made a few comments in the communication notebook. His speech is very limited so we rely on the notebook dispatches.
Mrs. W,
Nick slept well and didn’t wake up at all last night. But, he is in one of his “dropping moods.” He dumped out my water bottle. Al’s coffee cup nearly went airborne. He’s also hitting the popcorn button on the microwave and running the water faucets full blast. Oh, and he nearly shot me in the eye with Stop Pain spray he got out of my gym bag. It’s going to be one of those days.
Good luck, T
The bus couldn’t get here soon enough.
That’s a good day with autism. So, what a bad day looks like? Last July we attended a family reunion in Hot Springs. The air was stagnant and sweltering as we walked into town. My brother, looking to save a buck, opted to park on the outskirts of town where the parking is free. Ten blocks later we reached the city duck tour destination (motorized WWII era amphibious vehicles.) The guide honked his horn and we all blew our yellow duck bill whistles in excitement. We were met with little but a dull entry into Lake Hamilton and the highlight was the abandoned parking lot where the old K-Mart used to be.
After the tour we grabbed a bite to eat. Nick had all his favorites; chicken nuggets, fries and a Sprite. I thought for sure that he’d be fine walking back ten blocks. I was wrong. Just as we started to cross the busy main street, Nick stopped dead in his tracks. He began to grunt and pinch at his cheeks really hard. Then, he lashed out like a crazed chimpanzee thrashing, screaming, hitting and kicking.
I put his arms in a basket hold and pulled him away from the street to a nearby bank plaza. I struggled as Nick is nearly my height. By then, it had escalated to a full blown meltdown. There is no reasoning or consoling him. My older son, Hank tried to help me to control him. But I don’t allow him to take the brunt of the attack. He lashed at both of us in his rage, clawing with his fingernails piercing our skin and drawing blood.
My sister Laura and her family stood motionless off to the side. Ten minutes later, Nick began to calm down. We sat down on the hard, black tile edging that surrounded a flower bed. Nick’s whole body was shaking. I encouraged him to take deep breaths to relax. Hank licked the blood off his fingers and arms and wiped them on his cargo shorts. I looked down at my hands dripping with blood and stinging. My arms began to swell with bruises. You could see the heat coming off the pavement as gnats buzzed all around us.
I looked up and saw two police officers coming up from two different angles. They approached with caution. Their hands lay across their holsters.
“Ma’am is everything alright here? We received a dispatch of a possible assault in progress.”
I brushed off the sweat and frizzy curls off my face and shook my head. “Well, I could have use your about ten minutes ago.” Along with your tazor, I thought to myself.
Laura jumped in. “Officers, my nephew, Nick has both Down syndrome and autism. He is non-verbal. When he gets frustrated and doesn’t understand he lashes out.
“Ma’am is that correct?
I nodded.
The officers scanned the area looking for anything suspect. My brother-in-law offered to hike back and get the car and pick us all up. The policemen stayed with us until the minivan arrived. They handled the whole situation in a professional manner. As we waited, Nick began to show his remorse. He started to cry and patted my hand saying, “I sorry.”
That is a bad day with autism.
Nick’s behaviors with dumping have been challenging. In the past six months he has emptied out full containers of laundry detergent, fluoride rinse, baby powder, shower gel, shaving cream, and a bottle of red wine and a sixty-eight ounce tin of olive oil. The cat isn’t safe either. Nick emptied fajita seasoning all over her. We didn’t expect to have to put child locks back on the cabinets at this point in our lives.
This afternoon while gathering up a load of laundry, I heard hundreds of pellets hitting the kitchen floor rapid fire. He had emptied out a four pound bag of cat food. I grabbed the broom without any reaction and told him to clean up.
As Nick swept, I repeated my mantra. “This is a good day with autism.” Deep breath. Namaste.
That’s what in my noggin this week.
~Teresa
Blog #108~ Seinfeld Thinks He Has Autism
So Jerry Seinfeld thinks he might be on the autism spectrum. This story aired last week:
In his sit-down with Brian Williams, Seinfeld said, “I think in a very drawn-out scale, I think I’m on the spectrum.” The comedian added, “You’re never paying attention to the right things. Basic social engagement is really a struggle. I’m very literal. When people talk to me and they use expressions, sometimes I don’t know what they’re saying,” Seinfeld said. “I don’t see it as dysfunctional, I just think of it as an alternate mindset.”
Since this interview aired there has been an outpouring of criticism from the autism community. Many parents who are in the trenches battling autism are up in arms, and with good reason. They are dealing with their child having debilitating seizures, sleep deprivation, health issues and violent meltdowns. They face the reality that their child will never talk, drive, date, get a job, live on their own or get married. It diminishes what families go through and they find it insulting to their children’s diagnosis. Countless families are fighting to get services and funding for to take care of their child. Amongst all this, they are cleaning up poop smear accidents.
Here is a statement from Wendy Fournier, President of the National Autism Association:
“What frightens me with these kinds of statements and stories is that I don’t want people to think that autism isn’t a serious diagnosis, or that it’s not a struggle for individuals and their families. What many people don’t understand is that on that lower-functioning end of the spectrum, we have individuals who are suffering and whose lives are at risk.” “Autism is not a designer diagnosis,” Fournier added.
Let me throw in my two cents here. My son, Nick is 20 years old and has a dual diagnosis of Down syndrome and autism. His speech is very limited; he will never drive a car, date or get married and live on his own. He requires supervision 24/7. Oh and yes, I’ve cleaned up my fair share of $h*t storm accidents.
The only thing that Nick and Jerry Seinfeld have in common is that they are both incredibly funny guys.
I am a huge Seinfeld fan, and I’m not going to boycott his shows because he made these comments without a formal diagnosis. He has the right to how he feels and share his journey of self-discovery. But, I disagree with Seinfeld saying, “I don’t see it as dysfunctional, I just think of it as an alternate mindset.” He is suggesting that it’s just a different way of thinking, rather than a disorder. Well, autism is a disorder!
I fear that society and government policymakers will disregard the seriousness of autism spectrum disorder (ASD). The media is so quick to shine a light on the positive stories of autism, especially when a celebrity is involved. That’s great, I’m all for any media attention to raise awareness. I hope Jerry continues to use his celebrity status to help advocate for more funding and services towards autism. But society needs to see the other side of the spectrum and what families deal with on the front lines of the combat zone. Maybe next week, I’ll write about one of those bloody battles I’ve had with Nick. That’s what is in my noggin this week.
~Teresa
Blog #107~Dolphins and My Son with Special Needs
There is something about dolphins and Nick. The first time I noticed his fascination was on a field trip to the Shedd Aquarium when he was 6 years old. As the dolphins sprung out of the water he got so excited! The look on his face was sheer delight. I’d never seen him so joyful and mesmerized all at once.
A few years later, at SeaWorld in San Antonio, my sister witness Nick’s joy. Laura literally cried seeing Nick’s face light up. He is so drawn to the dolphins and beluga whales. Nick has Down syndrome and autism. His speech is limited. But no words were needed. The look on his face said it all. I knew that I had to find a way for him to get up close with dolphins as they seemed to be able to connect to Nick.
A few years ago we took a vacation down in the Florida Keys. This was a perfect opportunity to find a program where Nick could get in the water with the dolphins. There are many dolphin encounters in that area but I decided on a more personal experience at Hawk’s Cay Resort. “The Dolphin Connection” provided this with small groups of 4 or 5 participants. I spoke with the head trainer to discuss our son and his special needs. She assured me they were very experienced with handling such. I created a social story filled with icons to support Nick in understanding the schedule of events. It was a beautiful day with the warm sun cascading over the aqua waters of the Keys.
The first part consisted of a brief classroom instruction to go over rules and education on dolphins. Nick along with his Dad, brother and cousins were so excited to squeeze into wet suits and get down to the docks. The experience was very hands-on where each participant individually got to touch, feed, hug and even kiss these amazing mammals. Nick was completely engrossed. As the trainer had the dolphin roll over Nick quickly bent down to give the dolphin a “raspberry” on its belly. The trainer remarked, “Well, THAT’S a first”. Leave it to Nick, I have a feeling that trainer will never forget him!
The final portion of the dolphin encounter included interaction using hand signals. This was a huge splash as they were able to gesture and the dolphin would clap, twirl around, move backwards, and jump high in the air. As I stood behind the camera filming, I was deeply moved. This day was such a beautiful gift and the photo tells the story that Nick indeed was connected and absorbed in this moment.
Nick and his Dad……
Nick still likes to watch the video footage from that day. Two of his favorite movies are Flipper and A Dolphin Tale. I have to think that this unique experience will forever be one of the best things we have done for our son and together as a family.
Nick’s brother, Hank and his cousin Anna….
When you have a child with special needs and limited speech it can be extremely challenging to know what they are thinking, feeling and what they truly love. I had a hunch that this experience would be a slam dunk. Indeed, it was and then some. My heart is warm in knowing that we could give this to him. That’s what is in my noggin this week. 🙂
~Teresa
Re-Blog~Halloween Costumes and a Special Needs Child
This is a fun look back at some of the Halloween costumes the boys have worn over the years. Last Friday, Nick (who has Down syndrome and Autism) went gangsta to the school Halloween dance. Shockingly, he kept the hat and necklace on much longer than I anticipated.
Snoop Nick is in da house……
Click on the link below to view more costumes the boys have worn:
@https://nickspecialneeds.wordpress.com/2012/10/29/blog-28-hallow…over-the-years/
I’ve been doing more re-blogs because we’ve picked up a bunch of new readers since launching the Facebook Page, “Down syndrome with a Slice of Autism.” Plus it’s fun to go back and revisit some of these stories after two years. That’s what is in my noggin this week.
Happy Halloween!
~Teresa
My Guest Blog~ So Your Baby Has Down Syndrome
Recently I was contacted by an associate editor at Social Work License Map, a guide to social work licensure that clarifies the steps needed to become a social worker in any state. This social work site, also focuses on specific social work advocacy. I am very excited to share that my website, “Down Syndrome With A Slice Of Autism” will be included here. In addition, I did a guest blog spot which posted live last week. The guest blog is entitled, “So Your Baby Has Down Syndrome.” Just click below to view:
http://socialworklicensemap.com/guest-blog-so-your-baby-has-down-syndrome/
October is Down syndrome Awareness Month and there are so many good stories in the news. I will continue to post these on the Facebook page for you to enjoy. Thank you for reading and sharing Nick’s world. That’s what is in my noggin this week!
~Teresa 🙂
Blog #106~ Pets and Children with Special Needs
Having a pet in the home can be beneficial for a child with special needs. Pets can boost mental and physical health, alleviate stress, be soothing and reduce anxiety. For a child with special needs, a pet provides unconditional love and affection along with helping a child become more social. In addition, having a pet in the home can teach responsibility and empathy. Feeding and caring for a pet allows a child to shift the focus to a pet’s needs.
I witnessed this first hand with Nick. My 20 year old son has Down syndrome and autism. His speech is limited. He uses a picture book to communicate his wants, needs and feelings. On several occasions he has handed me these two icons:
This is our cat Miss Mellie of 17 years that passed away…..
For as long as I can remember, there has been a tabby cat in my life.
Me with Tiger back in the late 70’s……
When Nick was first born, we took him to get screened for the early intervention program. One of the questions they asked was, “What other family members were there?” They were pleased to hear this included an older brother and a cat. Both of them would help Nick become alert and engaged in the world. His brother could shake toys to get him to look up. A cat with a bell on his collar would also get Nick’s attention. Each time he would look up it would strengthen his neck and trunk. This in turn, helped to fight the low muscle tone associated with having Down syndrome.
Nick, Hank and Woody our cat….. (You can see Nick’s low muscle tone as he is propped up against his brother)
Woody was my faithful friend since college and lived to be 17. Several months later, we adopted Miss Mellie. You can read all about Nick and Miss Mellie’s relationship in the archives under the category, “The Fun Side of Nick”.
Nick thought she made a great task strip for his PECS icons…..
Now, we are in a new chapter having recently adopted a new kitten from the shelter. For more information click@ https://nickspecialneeds.wordpress.com/2014/09/29/blog-105-furry…needs-families She has been here for a few weeks and is settling in well.
We decided to name her Kibbie……
Kibbie is a 5 month old tabby. At first she was jumpy when Nick made his loud noises. But like the rest of us, those stimming sounds and yells are becoming white noise to Kibbie as well. (Well for the most part) 🙂 I am working on getting Nick to dangle the wands and throw cat toys for her to fetch. He is also serving her food dish each evening. My heart swells when Nick plants kisses on her head. I posted a video last Friday on the Facebook Page (Down Syndrome With A Slice Of Autism). There is also a video of the kitten playing fetch posted the week before.
It looks like the two of them are getting along nicely……… (yes we like taking sleeping photos in my family)
According to Brain Balance Centers, (http://www.brainbalancecenters.com), “The right family-friendly pet may be just what your child needs to better cope with daily stressors and other overwhelming sources of stimulation. Owning a pet may help ease these daily anxieties and help to better facilitate socialization and understanding. It may also benefit a child who struggles with sensory, social or behavioral issues.” I look forward to sharing the new adventures of Nick and Kibbie with you. Stay tuned for this and most likely a third installment of “Stuff On My Cat”. Thank you for reading and sharing Nick’s world (and humoring me when I write about cats). That’s what is in my noggin this week. 🙂
~Teresa
Down Syndrome Awareness Month!
Nick says yay and thumbs up! October is Down syndrome Awareness Month. Here is a blog I did a few years ago that will open your eyes to Down syndrome @ https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/
Thank you for reading and sharing Nick’s world. That’s what is in my noggin this week.
~Teresa 🙂
Blog #105~ Furry Friends and Special Needs Families
I wish that my iPhone camera was set to video last Friday. Nick came home from school and he was so excited to hear a tiny meow. We adopted a new kitten from the shelter. His face just lit up. He was so excited and delighted saying, “Yay, kibbie!” (That is how Nick says “kitty”) Nick has Down syndrome and autism. He also has verbal apraxia so his speech is limited. Yet, I am always amazed at some of the words he says. Many are things that he is passionate about. Here are a few: Taco Bell, McDonald’s, Sprite, cake, shower, Harold -from Thomas the Tank Engine, and yes….. a couple of expletives as well.
In Nick’s communication book he has many picture icons to request things and share his feelings. On many occasions, Nick has handed me these two icons paired together………
We had to put down our 17-year-old cat last summer. Miss Mellie was such a big part of the family. Nick had a lot of fun with her over the years. I’ve dedicated several blogs about their relationship……
https://nickspecialneeds.wordpress.com/2012/12/03/blog-33-stuff-on-my-cat/
https://nickspecialneeds.wordpress.com/2013/07/08/blog-62stuff-on-my-cat-part-ii/
https://nickspecialneeds.wordpress.com/2013/08/05/blog-63furry-family-members/
Here is a hint of what you can find on the blogs above……Splat!
Despite all the mischievous things Nick has done, Miss Mellie would still snuggle up with him……
Our new kitten is a sweet tabby as well. She’s 5 months old, loves to cuddle and has a nice deep purr. She is spirited yet not destructive, and even plays fetch! I’ll post some footage of her fetching on The Facebook page, “Down Syndrome with a Slice of Autism” this Friday. Nick has been swinging some of the wands that dangle cat toys for her. He is a little skittish when she wants to rub up around his legs. But otherwise, the two are getting along nicely.
Introducing the new furry family member……
So, you may have noticed that I haven’t mentioned her name yet. We are taking a few days to observe her personality and see what suits her. Nick’s brother (Hank), came in from NIU to meet her and brainstorm names.
Hank and kitty…..
I think she is settling in nicely….
I posted pictures on Facebook on Friday. My friend Kendra, suggested naming the kitten the first thing that Nick puts on her. Well if we do that, her name thus far would either be “Sneezy” or……….
Snots!!!
I look forward to sharing more about Nick and the adventures of our new furry family member. Stay tuned for the announcement of her name. And in the meantime, I’ll keep the shaving cream and fajita seasoning locked up. That’s what is in my noggin this week.
~Teresa 🙂
Blog #104~ Parenting and Discipline
I recently was in a conversation with two young mothers of school age children. Both were talking about how much they did for their kids. One mom commented that her daughter was old enough to make her own bed. Yet she would do it herself because her daughter did it so sloppily. The other one talked about scrambling to get the lunches made and double checking to see if all the homework was in their backpacks. I scratched my head and wondered about this. Why weren’t they using these opportunities to help foster independence in their children? I think as a mom, sometimes it’s just easier to do it yourself instead of constant reminders and nagging. But in the long run, this does nothing to teach your child responsibility. Which brings me to my point this week; parenting is not only disciplining your child but also staying disciplined yourself.
When you are raising a child with special needs, it is even more difficult to teach independent living skills. Things take longer to learn with deficits in speech, gross motor and fine motor skills. The process of putting on shoes and socks can be a ten minute ordeal. With the bus coming at 7:25 a.m. the morning may not be ideal to use as a teaching moment. But you can carve out chunks of time to practice independent living skills during down times.
My son, Nick is now 20 years old. He has Down syndrome and autism. Once at a high school conference, his teachers and therapists pointed out how good he was at self-care (in fact the strongest student in the class). I attribute this to three things:
1. Providing those teaching moments to practice skills
2. Using visuals so he can be prompted
3. Staying disciplined in the routine rather than just doing it myself
The most challenging thing I have ever done was getting my son with special needs toilet trained. It is also happens to be the greatest thing that I have accomplished in my life. It was certainly a marathon, not a sprint. In fact it was the longest and hardest marathon imaginable. And we stepped in a LOT of poop along the way.
When I look back at that road, one thing stands out on how Nick finally got toilet trained. It was DISIPLINE! Yes, I worked with autism specialists, went to potty training workshops and used visuals. But nothing worked until I disciplined myself to create a timed toileting schedule and stick with it. This (combined with the fact that Nick finally was mature enough), led to the success of him getting out of Depends and into underwear. And that was a glorious sight to see. 🙂
It was a long road but we made it to the other side, tada!
The importance of staying disciplined as a parent will pay off in the long run. You can’t wipe your child’s bottom forever. That’s what is in my noggin this week.
~Teresa
Down Syndrome with a Slice of Autism 
