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.
Presidents Day
Nick is home from school today for Presidents Day. So I am taking a break from writing to take care of him. Here are a few of my favorite presidential quotes. I hope you find inspiration in them. That’s what is in my noggin this week!
~Teresa
MLK Day
Taking this week off to honor of Martin Luther King Jr. Day. I’ll be back with a fresh blog next Monday. Here is one of my favorite quotes of his:
~Teresa
Re-Blog~ #78 Christmas Past
With the busy holiday season upon us, I opted to re-blog “Christmas Past”. Here is a little photo album of Christmas past with my boys @https://nickspecialneeds.wordpress.com/2013/12/16/blog-78christmas-cheer/
Wishing you all the best and take time to make memories with your family. They do grow up fast. That’s what is in my noggin this week.
~Teresa
Best to all of you on this holiday. Thank you for reading and sharing Nick’s World…We’ll catch you next week!
~Teresa
Here’s a great story about summer fun, memories and Nick @https://nickspecialneeds.wordpress.com/2012/06/11/blog-11the-good-ole-summertime/
Enjoy and back next week with more about Nick’s world.
~Teresa 🙂
Blog #93~Down Syndrome & Autism and Getting Help
Last Saturday was the National Down Syndrome Association (NADS) Retreat. NADS serves families in the Chicago area. This retreat is specifically for families that have a child with Down syndrome and autism. There is a children’s program that includes play time and swimming where respite workers are provided by NADS. Nick loves going to the retreat.
Nick enjoying pool time at the NADS Retreat a few years back……
The children’s program also has music therapy. Here’s Nick jamming last Saturday…….. 🙂
The parent agenda this year was to tackle some of areas that we’ve all been struggling with. Dr. Louis Weiss, Ph. D. lead a guided discussion of the top five topics chosen by the families attending the retreat. The five areas of discussion included:
One family posed the question about their child and regression of behaviors. Dr. Weiss made a comment which resonated with me. He said that regression can happen during periods of transition. Regression is a way to prepare oneself to move forward. If a person doesn’t feel safe they will pull back first before they can launch themselves forward.
I had as Oprah says an “Ah-ha moment”. Last fall, my son Nick (19 years old) out of nowhere began to wet his pants repeatedly at school. I figured it was stress because he was starting the new transition program. But after hearing this comment it all made sense now. He was trying to deal with a new setting and a crowded bus. Nick didn’t feel secure and his behavior reflected just that.
Speaking of stress, there is a great deal of it for families raising a child with Down syndrome and autism. Let me put a lens on what we talked about. Imagine having to wash the sheets every day after your 14 year old wets or soils them. Or how about this? The constant worrying that your 12 year old may take a dump in the neighborhood pool and shut it down. Picture a 15 year old getting off the bus and plopping down in the middle of the street. He won’t budge for a solid hour. You have to stand there and direct traffic around him because no one stops to help out, and you forgot your cell phone.
Here is the takeaway that I got from this session. Dr. Weiss suggested that we need to figure out what causes us to suffer. Then look at re-framing the story, in essence figure out a way to fix it. Maybe it’s hiring a sitter to come in and wash those dirty sheets. Perhaps counseling could help with the stress. In addition, just getting a new set of eyes on the problem may help. This can be done by contacting an advocate or behavior support specialist.
We spent the afternoon building a resource list, networking, sharing our struggles and offering advice to support each other. By the end of the day, parents walked away loaded with more power in their arsenals. I am grateful to have the support of NADS and the retreat. It’s good to share struggles, successes and get help. Plus, no one in our group bats an eye if a kid is tapping shoe insoles against their mouth, stimming on a karate belt or plopped right in the middle of the corridor. These guys remind me that I’m not alone on this road navigating Down syndrome and autism. That’s what is in my noggin this week.
~Teresa
🙂 One last thing, Did you notice I changed the title of my blog to Down Syndrome With A Slice of Autism? (Though some days I think it’s the other way around) 🙂
I also have a new Facebook page with this title. You will find some new things here including weekly videos of Nick being silly. If you are on Facebook, please take a look at this page: Down Syndrome With A Slice Of Autism and I’d appreciate it if you would like the page!
Blog #92~One Yellow Hash Mark at a Time
I just finished this book written by Chad Hymas:
Chad had everything, a beautiful wife, two sons and a thriving business. One evening he made a rushed decision to ignore safety in favor of getting home quickly. Chad was anxious to see his baby boy take his first steps. On that day in 2001, at the age of 27, his life changed in forever when a 2,000-pound bale of hay shattered his neck leaving him a quadriplegic.
What follows is the story of how he fought back to gain his independence and ultimately setting a Guinness World Record by wheeling his chair from Salt Lake City to Vegas (513 miles) in 2003.
This was no easy task for Chad. There was some good news. His spinal cord wasn’t severed. He was able to regain important functions and have wrist movement as well as function in his biceps. In the book, he talks about starting out with his “personal Guinness records”. They were the very basic things that most of us take for granted like putting his own shirt on, brushing his teeth, shaving, and even getting his drivers license. Chad overcame unsurmountable obstacles and continues to inspire others with his message on all 7 continents and 38 countries. He did it by letting go of his old ideas of who he thought he would be and reinvent himself.
The quest to set that Guinness World Record was daunting. The first few days went well. But the desert heat beat down on him, leaving his hands blistered and bloodied. He hits a wall, not able to fathom going another six days. His dad tells him to think of it as one day, not six days. He says “Just do one more day”. With his Father’s encouragement he broke down the goal into smaller increments. One day at a time became one mile at time. He was 90 miles away from his goal. But the mile markers seem too far apart. His Dad steps in, “Son, don’t give up. Break down the goal even more. Instead of mile markers, count the yellow stripes in the middle of the road. They come faster. See if that helps.” After eleven days Chad Hymas crossed that finish line setting a new Guinness World Record!
As I read his powerful message, I thought of all the “personal Guinness records” that my son Nick has mastered. Nick is 20 years old. He has Down syndrome and would later be diagnosed with autism. Low muscle tone is a trait of Down syndrome. It affects not only gross motor skills but also chewing and swallowing food.
A very low tone Nick flopping over on his brother, Hank……
My son would not eat textured foods nor would he walk until he was nearly 4 years old. All the tasks to get him there were broken down, just as Chad Hymas did. It took Nick a long time to become independent with dressing, brushing his teeth and shaving. But he has hit all of those benchmark and then some.
I never imagined Nick would be able to do something like scuba diving…
Chad Hymas reminded me of something important. “Shift the focus on what I can do.” His friend and mentor, Art Berg was right, “You and I can do anything anyone else can, if you’re willing to do it differently.” As I continue to help Nick become more independent, I am going to keep Chad in mind and tackle each task one yellow hash mark at a time. That’s what is in my noggin this week.
~Teresa
For more information about Chad Hymas: http://www.chadhymas.com
Happy Labor Day everyone. I am embracing the holiday and taking a blog break this week. If you haven’t read last year’s back to school blog check it out:
https://nickspecialneeds.wordpress.com/2012/08/27/blog-19-back-to-school/
Enjoy your holiday and see you next week!
~Teresa
Happy New Year, wishing you health and happiness for 2013. I look forward to bringing you more stories about Nick’s world.
Cheers!
~Teresa
My little elf Nick
We wish you all a Merry Christmas and a Happy New Year. We are on vacation and will resume the posts in two weeks. May your holidays be blessed with joy, family and friends. 🙂
Cheers~
Teresa
Down Syndrome with a Slice of Autism 