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.
All the funny, mischievous things Nick gets into. Fire alarm pulls, stuff he dumps and drops on the floor and our cat. Click here if you need a good chuckle.
Vacation Update……
This week takes us to the Outer Banks, NC (OBX). Here is a re-post of a blog I wrote two years ago about the OBX, Nick and special needs swim instruction @https://nickspecialneeds.wordpress.com/2012/08/13/blog-17-lifes-a-beach/
That’s what is in my noggin this week, enjoy!
~Teresa 🙂
Re-post~ Flying with a Special Needs Child
I often get asked the question of how Nick does flying on airplanes? It’s not easy having a child with special needs, let alone Down syndrome and autism. Since it’s prime vacation time for many families I thought a re-post of this blog might shed some light on how Nick does on airplanes…. How do you NAVIGATE?????
@https://nickspecialneeds.wordpress.com/2012/07/30/blog-16-up-up-and-away/
That’s what is in my noggin this week. Enjoy and thank you for reading and sharing Nick’s world. 🙂
~Teresa
Summer Vacation Update
We are back from a two week vacation break. It’s never certain how a person with a dual diagnosis of Down syndrome and autism will do with changes in schedule and venues. Here’s what we’ve been up to………
Nick enjoyed going out with his respite worker, Lara to Blackberry Farm. While on a ride, filled with little kids they hit a big bump. Nick blurted out a loud expletive. Let’s just say the little ones might have learned a new word they shouldn’t have. Uncle Thomas came up from Texas for a visit. It was fun to share laughs together and grill on the deck. Nick showed his Uncle how he likes to play musical chairs. Every time someone would get up, Nick would grab all his tappers and stims and steal their spot. He’d laugh flashing that devilish grin of his.
The second week, we took a road trip to attend a family reunion. Our route down took us thru St. Louis……
We arrived at our destination 11 hours later at Lee’s Resort in Grove, Oklahoma….
Nick did really well in the car. You just have to tune out the sound of the tennis balls tapping incessantly and watch out for flying toys and objects coming from the back seat.
Nick tapping on my shoulder on the road trip 🙂 “Wake up Mom!”
It was so much fun to be with the family. On Friday, we rented a pontoon boat. His Grandma, cousins, aunt and uncles had blast tubing and he loved riding fast in the boat. Nick was doing great until we had trouble getting the anchor to stay put. We were ready to relax and float in the lake for a bit. After several failed attempts in three different areas, Nick began to get upset and agitated. Poor guy, he didn’t know what was going on. Finally, we found an abandoned dock and tied up to it. It took some coaxing to convince Nick to put a life jacket on and get in. (Normally I would have made some visuals for him to follow. But we didn’t plan the boat excursion in advance). For persons like Nick, who have Down syndrome and autism it is important to show visuals so they understand what is going on and also what is expected of them. Eventually Nick made his way to the stern of the boat. His legs were trembling as he slowly went down the stairs. Oh, but once Nick hit the water, he took off doggy paddling so fast as if he was after a fire alarm.🙂
Grand Lake in Grove, OK…..
After five days of visiting, games, filling up on homemade banana pudding, cobbler and ice cream, we hit the road back to Chicago. Driving amongst the corn fields I got to thinking about our time with the family. We are very fortunate to have their support and understanding about Nick. I looked up into the sky at the clouds trying to zone out ESPN radio. One cloud looked like a Dalmatian with wings. Another resembled Dory, the fish from the Disney movie “Finding Nemo”. Nick was busy tapping a water bottle and cracking himself up laughing. I have no idea why. What I wouldn’t give to get inside his noggin and see what he’s thinking. Since that is not possible I can only go by his demeanor.
Nick hung in there well and did better than I expected at the family reunion. The only time he got mad,(besides the anchor problems on the boat) was when the tables were rearranged in a different configuration for the final dinner. (He had been sitting in the same spot for every meal.) Yes, he made loud noises, blew snot rockets and threw things just as he does every day. But that’s just Nick’s world. I’m not sure what some of the extended family members know or think about Nick. The ones who choose to engage feel a connection in his hugs, fake sneezes, burps and elbow bumps. It warms my heart to see that Nick has those family bonds. We made it without any meltdowns and Nick had a great time and for that, I am thankful. That’s what is in my noggin this week. 🙂
~Teresa
Blog #96~ Best Buddies Program
Spring is in the air! I scrolled the Facebook wall over the weekend admiring all the beautiful gals dolled up in their prom dresses and the young men looking so handsome in tuxedos. It’s a rite of passage for high school students, but one that my son Nick never had a chance to experience. Nick has Down syndrome and autism and the prom just wasn’t in the cards for him. But enter this awesome program called *Best Buddies.
Students like Nick who have intellectual and developmental disabilities are often isolated and left out of traditional school activities. That’s where the Best Buddies program comes in.
“The Best Buddies program fosters one-to-one friendships between students with and without intellectual and developmental disabilities (IDD). Best Buddies helps to create an inclusive school climate breaking thru social barriers at an important time in a young person’s life. This non-profit organization is dedicated to establishing a global volunteer movement that creates one-to-one friendships, integrated employment and leadership for people with IDD. Founded in 1989 by Anthony K. Shriver, Best Buddies has grown internationally from one school chapter to 1,700 middle schools, high schools and college chapters worldwide. Best Buddies has eight formal programs impacting 800,000 individuals both with and without intellectual and developmental disabilities worldwide.”
How did Best Buddies impact Nick’s high school experience? Because of Best Buddies, Nick was able to enjoy a wide variety of extra-curricular activities. Each month the group participated in meetings, community volunteering, parties, and social events such as bowling, going to the movies, out to eat and to local parks. In addition, the group hosted two dances a year.
Nick volunteering at a Knights of Columbus fundraiser……
Nick heading to the Best Buddies Spring Dance……
Nick looked forward to these events and being paired up with his peer partners. I am very grateful for these students who volunteered their time to the Best Buddies program. Nick had a special connection with each of his peer partners. This program truly enriched his high school experience. That’s what is in my noggin this week.
~Teresa 🙂
For more information on Best Buddies: http://www.bestbuddies.org
Blog #90~Autism Awareness Nick Style
It’s April which is “Autism Awareness Month”. Believe me I am quite aware of autism. Nick never lets me forget, nor anyone else who is around him. Last week was spring break. My twenty year old son who has Down syndrome and autism was lighting up more than just blue. Here are the highlights…
Day one of spring break:
Nick is pushing every button he can find, microwave and bathroom fans, turning up the TV volume to 99 and finding the one button on the iPod home which blasts Hispanic radio music. It’s going to be a long week. The music is heavily laden with the sounds of trumpets, trombones and accordions. By the way, the radio station is WLEY-FM (107.9 FM La Ley) features a regional Mexican music format focusing on Ranchera.
Day two of spring break:
It started out with Nick popping up at 6:30am. He came in and pressed the iPod home button to 107.9FM next to my bed as he giggled and let out a big fart. He followed this up with an early screening of “Grown Ups” (volume level 99) and blasting the water faucets. Thankfully Lara, his respite worker took him to see the new Muppets movie and out to lunch. That afternoon, he crawled into bed with his DVD player wearing his blue sunglasses. The “Grown Ups” movie may get deep sixed before this week is over.
Day three of spring break:
I got a 5:15am wakeup call from Nick, (mind you on any school day I have to throw a stick of dynamite in his bed to wake him up). I put him back to bed and managed to sleep in until 7:30am. Morning coffee time was drowned in you guessed it another showing of the movie, “Grown Ups”. All day long nothing but yelling, tennis ball can tapping, and microwave/ phone intercom button pushing. In between those antics, Nick would run upstairs to push the iPod to 107.9. Viva Nick! The noise can be mind numbing, not to mention the snot rockets he blows and wipes across the flat screen TV. Today is “World Autism Awareness Day”. Believe me I am well aware of it.
Day four of spring break:
It’s cold and rainy, but at least he slept in until 7:30am. Nick watched movies with his respite worker while I went in to teach stability ball and step classes. He was even sillier today, must be the cabin fever. I’ll let the pictures speak for themselves.
Silly guy 🙂 …..
His favorite dumping spot, behind the flat screen TV. Good news, I found my shoes….
Poor Stuart Little…..
Day five of spring break:
It’s my day off from teaching and thankfully Nick slept in until 9:00am so I was able to enjoy my first cup of coffee in peace. He was pretty good today, with the exception of a few button pushes, blasting 107.9 and flicking the bathroom light on and off while I showered. It was cold and blustery so we bundled up and headed out to Taco Bell.
Nick loaded up with stims……
He was so excited when we got there. Just one problem, the ice machine wasn’t working. Nick stood there pushing the ice button to no avail for several minutes. He wouldn’t budge. One thing about autism, any change in routine is a possible trigger to set him off.
I finally got the attention of a worker who was able to fill up our cups with ice behind the counter. Meltdown, deflected….. whew!
Day six of spring break:
Hallelujah, Nick slept in until 10:00am! Thankfully he chose to watch a different movie…….
I took him out to eat at Burger King. We usually go out later around 1:30pm to avoid the lunch crowds and curious stares. I couldn’t believe it, when we walked up to the drink station guess what? They were out of Sprite…. are you F’ing kidding me?
Nooooooooooooooo…….
I asked Nick if he wanted Coke or Minute Maid Lemonade. He screamed and pinched his cheeks hard. We made it to the table but he wouldn’t eat. He kept clutching and pulling at his cheeks. Finally, he started to eat his fries but wouldn’t touch his drink. “Nick, want to drink your Coke?” He let out a big yell. Another couple whipped their heads around staring at us. I smiled and said, “That’s autism, isn’t it nice?” After eating all his fries and chicken tenders he finally took a sip of his drink and let out a burp and a smile. Whew, meltdown avoided. This calls for some ice cream…..
The sun came out and the temps were warming up close to 50 degrees, so we took a walk in the park. It was a nice, peaceful ending to a long week.
It’s not all noise, pranks and chaos with Nick. He does sugar coat things with his smile, hugs, kisses, snuggles and elbow bumps. I’ve come to appreciate his creativity and sense of humor that keeps me on my toes. Hope you enjoyed my installments of autism awareness, Nick style. That’s what is in my noggin this week.
~Teresa
Blog #86~ Down syndrome and Autism… Boy to Man
I find it mind blowing that my son turned 20 years old. What a strange dichotomy. In many ways he is much like a child. Nick still watches Thomas the Tank Engine DVD’s and plays with kiddy toys. He needs prompts with grooming, dressing and navigating throughout the day.
He is small in stature, and at first glance you might mistake him for a middle school aged student. But if you take a closer look, there are signs that he is indeed a young man. His voice is deep and you can see the visible razor stubble on his chin. That, and the fact that he likes to sneak a gulp of his Dad’s beer on occasion. 🙂
Bottoms up Nick……
At Nick’s conference last week, a poignant question was raised. What are his barriers for increased independence? For Nick it is his impulsiveness. It’s that need to push buttons, in particular those big red buttons. He can never be left alone.
For those of you keeping score at home, the current count is 30 pulls since 3rd grade…….
In the Down syndrome and autism support groups we all scratch our heads at the antics that our kids come up with. The reoccurring theme is that impulsiveness. It’s uncanny, the things they come up with to mess with us. So often, our stories are similar. Maybe it’s throwing a shoe out the bus window, coming in like a seagull and swiping something off your plate, opening up the car door while you are driving 50 miles an hour, stripping down buck naked, throwing an iPhone down the toilet, turning the TV volume up to 99, blowing a snot rocket and wiping on the flat screen or pushing the microwave and phone intercom button repeatedly.
Or dumping an armful of hangers into the washing machine…
Hardy har har Nick, good one! There are a lot more pictures in Blog #3~Getting Your Goat, located in the April 2012 archives.
Within the framework of the “barrier question” above, it becomes increasingly obvious that these behaviors need to be controlled and contained. Best case scenario, maybe Nick needs to express his funny side in a more appropriate fashion that is less invasive. There is no way he could survive in a group home pulling such pranks.
We have two more years in the post-secondary transition program. On the day of his 22nd birthday the little yellow bus will stop coming to the door. So, the IEP goals for Nick need to be focused on global independence both in the community and at home. It’s a bit daunting but then again, so was toilet training him. Somehow we survived that. I look forward to the IEP next week and seeing how his program can be shaped to foster a more mature adult version of Nick. That’s what is in my noggin this week!
~Teresa
Update~Nick Turns 20
I can’t believe that Nick turned 20 years old last Friday. It seems like just yesterday that he came into this world.
Nick enjoyed his favorite meal that evening, a big bowl of pasta!
He had a blast at school with a birthday dance party earlier that day. He loved opening his presents. Big guy is convinced that all greeting cards make noise now. Here he is stimming away to the card his Aunt Laura and Uncle Scott sent him.
Last night we went out to dinner with the family. Guess what Nick had to eat? That’s right, another big bowl of pasta. We topped off the evening with a decadent triple chocolate cake! After a evening of gluttony, we settled in to watch The Beatles special.
I have a lot of thoughts floating around in my noggin about the last 20 years, and raising a child with Down syndrome and autism. It’s a mixed bag of emotions~joy, triumph, gratitude, and amusement tossed with fear, sadness, frustration and anger. I’m going reflect for a bit and share at a later date. For now, I will try to get use to the idea that Nick is not a child anymore. Not an easy task given his childish ways. That’s what is in my noggin this week.
~Teresa
Blog #82~Hats off to Nick
I’m sitting in the kitchen looking out the window. The sun is gleaming across the snow covered yard but it’s deceiving as the thermometer reads -1 degree. Nick is home as the school district declared yet another snow day. So we are hunkered down as this polar arctic blast paralyzes the city and a large portion of the country.
I’m a Texas girl, when the temps dropped down to 50 degrees I use to whine. The whole state shuts down when hit with snow and ice……..
However all that has changed since living in Chicago. My threshold has altered significantly. The other day I headed out to teach a spin class, it was 29 degrees. I felt like I didn’t need a coat. One thing I have to say about Nick is that no matter what the thermometer says he is always barefoot around the house.
Even in the dead of winter he has never liked wearing hats and gloves. A 6 year old Nick taking on the backyard hill……..
Many of my friends who have children with a dual diagnosis of Down syndrome and autism can relate. We can tell you at least one story about our youngsters stripping down buck naked for no apparent reason. That’s how our kids roll. Boy am I glad those naked days are over with Nick, especially this winter. As long as I can remember, it has been nearly impossible to keep hats, gloves and shoes on Nick in the winter. My friend, Susie use to share stories about Nick when the bus pulled up to get her son. As soon as the door opened, out came a flying shoe. Hardy har har….. Susie would have to pluck it out of the snow and hand it back to the bus aid. Well played Nick, well played. 🙂
Nick and hats, they just don’t go together. He barely keeps one on from the walk out the front door to the bus. He won’t wear his jacket hood either. His occupational therapist has been working with him to put them on independently along with tolerating it for longer periods of time. He’s getting a little better with it. When I picked him up the other day, he sat patiently wearing both a hat and gloves. I asked the OT, how she got him to put them on. She said, “I told Nick, its cold outside, put these on”. Funny how they listen to the therapists and become compliant. So I’ve been leaving a variety of hats sitting out in case he wants to try one on. Over the past month or so, he is actually giving them a go.
This morning he put on his Dad’s gloves……
I wish he would wear hats more. He looks so cute in them. This one lasted well over 15 minutes. Bravo Nick!
But for now, I’ll just be satisfied for him to keep a hat on outside in the subzero elements. Hat’s off to Nick for trying to keep them on longer. That’s what is in my noggin this week. Stay warm my friends and let’s hope the groundhog doesn’t see his shadow! 🙂
~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 #75~ 5 Reasons I am Thankful for Nick
The road I have travelled with Nick was not in the plan. It’s the thin, grey line on the map that is bumpy and full of twists and turns. Nick has Down syndrome and autism. The pace was bogged down as he struggled to hit developmental milestones. Other times it has been lightning fast, (like when you are racing to beat him to an exposed fire alarm). After 19 years and 30 fire alarm pulls, I am very thankful for Nick and here is why:
1. I appreciate the small successes much more now. I don’t take anything for granted that a child has to learn like sitting, eating, crawling, walking, talking and especially toilet training. Each victory has been sweeter when Nick hit the marks.
2. I am more grounded because of Nick. He has taught our family to stay humble. While other moms were bragging about their child getting A’s in honors classes, being the star athlete and what colleges they were looking at, I smiled politely. In my mind I was thinking, “At least Nick didn’t pee in his pants at school this week.”
3. I’ve become some what of an expert on Down syndrome and autism. Through trial and error along with wonderful teachers, therapists and mentors I have learned what works best for Nick. I am now able to pay it forward in my writing, speaking engagements and helping other parents out.
4. Life is never boring with Nick. He cracks me up with his mischievous ways. He generates laughter and tons of “Likes” on my Facebook page: Down syndrome With A Slice Of Autism”.
Here’s Nick’s signature elbow bump, (his version of a high five) with his Dad and Aunt Laura 🙂
He’s got that look on his face like, I’m going to grab your wine) 🙂
What a jokester, hardy har har Nick……
5. Nick gives unconditional love so freely. Each morning he wakes up, lets out a fart and smiles. All through the day he showers me with kisses, elbow bumps and hugs.
I am truly thankful to have travelled down this road with Nick. It has been a blessing to be his mom. That’s what is in my noggin this week. Have a wonderful Thanksgiving!
~Teresa
Down Syndrome with a Slice of Autism 