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.
4th of July Holiday Break
Hank turned 22 yesterday. 🙂 Here’s a previous post he wrote about being Nick’s brother @https://nickspecialneeds.wordpress.com/2012/05/28/blog-9-brotherly-love/
I am taking a two week break to celebrate birthdays and a family reunion. Thank you for reading and sharing Nick’s world. Have a safe and enjoyable 4th. 🙂
~ Teresa
Blog #100~ 20 Tidbits about Nick
To celebrate the 100 milestone of this blog “Down Syndrome with a Slice of Autism,” I made a list of 20 things about my son Nick.
Nick 20 years ago, what a little kewpie doll…..
1. Nick was born the day after his Dad’s birthday.
2. Nick was in NICU and on oxygen for one week due to an AV valve in his heart not closing. Fortunately, this closed up within a week. He was released from the hospital on Valentine’s Day which was also Ash Wednesday.
3. Nick started early intervention with speech, occupational and physical therapy at 8 weeks old. They taught him sign language. He worked on a stability ball to build core strength long before it became trendy.
4. Nick was the youngest child to start horseback riding therapy in the early intervention program at age one.
5. We use to prop up pillows on the sides of his high chair to keep him from flopping over to the side, until his core became stronger.
6. Due to his low muscle tone (a trait of Down syndrome) he didn’t walk or eat solid foods until he was 3 ½ years old. We did a co-treatment with extensive OT and speech therapy with a feeding specialist using the Debra Beckman feeding technique
7. Nick doesn’t like yogurt or applesauce because I’d mix this awful smelling and tasting Nutrivene Vitamin Supplement into them.
8. To get Nick to pull up to stand, his brother would bounce ping pong balls on the coffee table to catch his attention. I also hung several music toys over the fireplace so he had to pull up to his feet to hear the music. (Hmmmm, maybe that’s why he’s obsessed with pushing buttons.) 🙂
9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.
10. He has been overseas three times including London, France and Spain.
11. Nick can replicate exact sneezes, high and low pitch, big and small ones.
12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.
13. Nick’s a thrill seeker and will sign “more” as soon as a roller coaster ride is over.
14. He hates to wear hat and gloves no matter how cold it is.
Unless he’s indoors :)……….
15. Nick’s favorite actor is Eddie Murphy, in the movies The Nutty Professor, Doctor Doolittle, and Norbit.
16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them). He does LOVE salads.
17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.
18. Nick was evaluated for autism at age 5, but didn’t get a formal diagnosis until he was 11 years old.
19. Nick has a thing for dolphins and beluga whales.
20. Before the 30 fire alarm pulls, Nick would grab car remote keys and set the alarms off.
Hope you enjoyed the 20 snippets about Nick. Thank you so much for reading and sharing Nick’s world for the last 100 blogs. That’s what is in my noggin this week. 🙂
~Teresa
20 Year Old Nick…..
Follow Nick:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism
Instagram #nickdsautism
Twitter @tjunnerstall
Blog #99~ *Essential Oils and Sleep
*The statements on this blog regarding essential oils are my personal testimony only. Any claims made for the products listed below are based on the experience of my son, Nick who has Down syndrome and autism. The products have not been evaluated by the FDA.
Recently, there was a discussion about essential oils on one of the Down syndrome & autism Facebook groups that I belong to. A couple of mums from England described the benefits of using Bach Flower remedies to promote better sleep. I decided to do some research on essential oils to see if they might benefit Nick.
Here’s what I pulled off the website: http:// www.bachflower.org
“Bach Flower Remedies were invented and developed by Dr. Edward Bach about 80 years ago. Dr. Bach isolated and classified 38 flowers from which he extracted 38 essences with which he succeeded in healing patients’ ailments while taking into account their individual emotional states. Dr. Bach found that certain flower essences led to self-healing, as they purified the patient of negative elements that adversely affected their health.”
There is a difference in Bach Flower Therapy and other essential oils. I found the following link which contains more information that further distinguishes them: http://goodworkswellness.com/difference-between-bach-flower-remedies-essential-oils-and-herbal-tinctures/.
Essential oils work on the body, mind and soul. I learned that these oils were more than just a fragrance. They can provide immense health benefits for humans and animals. They are natural, non-toxic and non-habit forming. The oils can be administered topically, aromatically, and most can be taken internally.
When using them topically add 1-2 drops to carrier oil (such as coconut or olive oil) and massage over a large area. Avoid rubbing essential oils on the skin directly, always mix them with a carrier oil. You can rub the mixture on the bottoms of the feet or back of the neck at the brain stem and gently massaged into the skin. The second way to administer the oils is aromatically using a diffuser. The third way is internally. It is best to assume that an essential oil should not be used internally, unless the product has been specifically labeled as safe for internal use.
After doing this research I decided to give it a try. I’d welcome anything that would help Nick sleep through the night.
I went to Fruitful Yield, a natural food and vitamin store (in Oswego, Illinois), where a very helpful staff guided me to a few types of the essential oils. Here’s a sample chart of some of the oils:
I decided to pick one Bach Flower remedy called “Vervain,” which helps you to relax when you are over enthusiastic or strongly driven. The second oil was suggested by the staff person at Fruitful Yield……
“Now Essential Oil Peaceful Sleep”………
The Now Diffuser was very easy to use and priced at $30 dollars. It BPA-free and utilizes high-frequency ultrasonic electrical vibrations to create an ultra-fine aromatherapy mist. Also, it doesn’t utilize heat, which maintains essential oil integrity and holistic properties. You simply fill it the line with tepid water, put a few oil drops in and push the button. A plume of mist filled with the scents of orange, tangerine, lavender, chamomile, ylang ylang oils along with sandalwood in the Peaceful Sleep Essential Oil then fills the air. It is a floral citrus aroma with benefits to calm, relax and soothe. The Now Diffuser also has a light that changes colors intermittently.
Nick’s out like a light 🙂 ……….
After using the diffuser with the peaceful sleep oil for two weeks, I am happy to report that Nick is sleeping much better. There is a notable difference. Nick is relaxing and falling to sleep much quicker than he usually does. He is also sleeping without interruption almost every single night.
I haven’t tried the Bach Flower Remedy yet since the Peaceful Sleep Oil is working like a charm for Nick. This experiment with using essential oils to help with sleep has been very successful for Nick. As I have mentioned in other blogs that I’ve written, it’s good to think out of the box. That’s what is in my noggin this week. 🙂
~Teresa
Blog #98~More Special Needs Resources
How do I even try to come close to topping last week’s blog post? Ryan Solomon’s story about being Nick’s Peer Partner touched so many people. This post got 1,750 views (the most ever) on my Facebook Page Down Syndrome With A Slice Of Autism! 🙂 Just in case you missed it, here’s the link, and don’t forget the box of tissues:
@https://nickspecialneeds.wordpress.com/2014/06/02/blog-97-being-…s-peer-partner/
Nick and his Peer Partner Ryan…..
This week is all about more resources related to special needs. During the recent NADS Family Behavior Retreat, I lead a brainstorming session to pool together all the resources the parents had. We put our noggins together and found support in these areas:
*Autism Support and ABA Therapy
*Advocacy and Legal
*Doctors, Dentists and Specialists
*Therapists
*Recreation and Leisure
*Online Support Links
*Toileting and Personal Care
*Tech Support and AAC Devices
*Safety and Wandering Prevention
Here is what we came up with. There are many more that are based out of the Chicago area that are not listed below. If you would like those as well drop me a message. Please note: This is a parent recommendation list. NADS does not endorse, recommend, or favor any products, processes or services on this list.
Autism Support and ABA Therapy:
www.easterseals.comEaster Seals offers programs, training and equipment for families
www.theautismprogram.org Autism resources
Advocacy and Legal:
www.SpecialNeedsFreedomGuide.com Free Estate Planning Guide
www.LifesPlanInc.org Estate planning
www.specialneedsadvocacy.wordpress.com Advocacy for parents
www.specialedadvocacy.orgAdvocacy site for parents and teachers
Doctors, Dentists and Specialists, Therapists (are all Chicago based)
Recreation and Leisure (most are Chicago based but here are a few others):
www.nps.govNational Park Services free camping tent and tools for first time campers
www.discovernac.orgNational Abilities Camp in Park City, Utah
www.thebikerack.com Special needs bikes and bike modifications in St. Charles
www.joniandfriends.orgParent/child camp in Michigan
www.gigiplayhouse.org Down syndrome Awareness Centers
www.icanshine.org Loose the Training Wheels bike camp
diveheart.org Scuba and Snorkeling for persons with disabilities
www.bigbeadjewelry.com Special needs micro-enterprise
www.specialsparkle.com Jewelry micro-enterprise run by a young adult with Down syndrome
www.downsdesigns.comSpecialty clothing and jeans that fit
hammertravel.orgTravel opportunities for special needs
Online Support Links:
www.parentcenterhub.org Extensive information and help with links your state/local agencies
www.behavioradvisor.com/FBA Behavior support site
www.myautismteam.comNetwork site for parents
www.bridges4kids.orgGreat Resources for special needs families.
www.mayer-johnson.comBoardmaker software
www.teeach.comInformation on TEEACH materials
www.bridges4kids.orgIEP Goal helpful ideas
www.noahsdad.comEnjoyable site highlighting Down syndrome
Toileting and Personal Care:
www.especialneeds.co/diapers-pads-incontinence-swim-diapers.html
www.Theraquatics.com Swim diapers for child and adults
www.incont.org Diapers, swim diapers and related products
wetstop.com Bed wetting alarms
Tech Support and AAC Devices:
www.easterseals.orgAssistive tech evaluations and training
www.mydynavox.com Free 30 day trial app available ($29 monthly thereafter)
www.silver-kite.com/touchChatCommunication application for iPod/iPad technology
www.assistiveware.com/product/proloquo2goAugmentative and Alternative Communication
Safety and Wandering Prevention:
www.awaare.org. Autism Wandering Awareness Alerts Response Education has a comprehensive list of tips, materials and tools.
www.medicalert.org Medical ID bracelets
www.projectlifesaver.org Tracking system located in various cities
www.caretrak.com GPS Tracking bracelets connected to participating police departments
safetynetbylojack.com GPS tracking device for wrist or ankles
There are more resources and links in Blog #84 and #85 (located in the February 2014 archives). If you have any others please share them in the comment section below. This list (much like Nick’s behavior plan and * painting the Golden Gate Bridge) is never quite complete and always evolving.
Golden Gate Bridge with the family and my niece Courtney when we lived outside San Francisco 15 years ago. Note barefoot Nick (he would never keep his shoes on back in then)…….
That’s what is in my noggin this week. Stay tuned for more about Nick’s world next Monday. 🙂
~Teresa
*According to goldengatebridge.org: There are a couple of misconceptions about how often the Bridge is painted. Some say once every seven years, others say from end to end each year. The truth is that the Bridge is painted continuously. Painting the Bridge is an ongoing task and a primary maintenance job. The paint applied to the Bridge’s steel protects it from the high salt content in the air which can cause the steel to corrode or rust.
Blog #97~Being Nick’s Peer Partner
This week, I am very excited to share this piece written by Ryan Solomon. Ryan was Nick’s peer partner at Metea Valley High School. The Peer Partner Program operates in conjunction with the Adapted Physical Education Department. It allows selected students the opportunity to provide mentorship to students with a variety of abilities. Ryan’s experience with Nick, (who has Down syndrome and autism) inspired him to write this essay for college consideration.
Essay by Ryan Solomon:
“My application lists my three–‐sport varsity achievements –including all–‐conference and all–‐academic in soccer, basketball and baseball. You might think I’m a competitive, insensitive jock. So, you may find it ironic that I applied to “opt out” of PE class. Two years ago I was selected as a “Peer Partner” with 26 other students to assist special needs students in Adaptive PE. I have thoroughly enjoyed the experience – especially last year. I’ve learned that I am sensitive and caring from my yearlong association with a person that has had a significant influence on me, my “Best Buddy” Nick Unnerstall.
Nick is severely mentally challenged and barely able to speak. Last year, when I was “peer partnered” to swim with Nick, I was afraid it would be a daunting task. Before we met, I expected to see a sad child scared of the school’s enormous swimming pool. Instead, when I got to the pool, Nick, wearing his floaters, jumped in fearlessly. We swam together the entire period. The look on his face was refreshing–‐full of curiosity and wonder. His smile beamed ear to ear. The instructor thought it would be difficult for me to handle Nick daily -from preparing to swim, swimming and getting him to class –but that was not the case! Her concerns disappeared as Nick and I bonded nearly instantly. We showed up excited to swim every day. Swimming was the one thing that Nick looked forward to each day.
After class I’d help Nick to lunch. We’d just smile even though no words were shared. Simple motions and expressions allowed us to communicate. This daily routine put my life into perspective. I used to think it was tough having homework and a game on the same night; dealing with a sports injury; or getting caught up with drama among friends. None of this compares to what Nick goes through every day and for the rest of his life.
Through Nick, I’ve learned to appreciate all that I am able to do and have learned not to take anything for granted. Before Nick, I believed I deserved starting positions in sports, or recognition and respect from my peers regardless of my actions. I put myself in his shoes and can see the adversity Nick faces each day from trying to be understood to struggling to get down the hallway crowded with students. I now realize no one deserves anything without hard work. Although I believe I work hard athletically and academically, it does not compare to the Nick’s challenge to speak or get in and out of the pool. Now, I work hard at being a compassionate and caring person.
Because of Nick, I am thoughtful of what I say and do. I have become much more aware of those around me. Nick shows me there is more to my life than academics and athletics. With Nick and Peer Partners, hard work, compassion and caring helps me help others.”
Ryan and Nick 🙂
Reading this essay warmed my heart. As his mom, it is wonderful to know that Nick has made a difference in Ryan’s life and no doubt many others. Ryan just finished his sophomore year at The University of Illinois. I would like to thank him for sharing his story of working with Nick.
That’s what is in my noggin this week. 🙂
~Teresa
Take some time today to remember and honor the brave soldiers who fought for our freedom. I’ll be back next week with a new post.
Did you get a chance to read these two posts from last year about “Wandering and Autism”? They contain crucial information that everyone should know as we move into the warm weather season:
@https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/
@ https://nickspecialneeds.wordpress.com/2013/07/29/blog-62wanderi…autism-part-ii/
Have a blessed day and thank you for reading and sharing Nick’s world.🙂
~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 #95~ Do Just One Thing
It feels like a Monday morning. I’m bouncing around from one thing to the next and getting off track in the process. I started a load of laundry and took off upstairs to grab my sweaty gym clothes. Speaking of the gym, what playlist am I going to use for spin class tonight? I paused at the bottom of the stairwell to rescue a drooping hydrangea flower which badly needed water. While upstairs I made the bed, grabbed some hangers and scooped up another basket of dirty clothes. I heard a strange noise coming out of the laundry room. The spin cycle wasn’t working on the trusty Kenmore, crap! I sat down at the computer to schedule a service appointment, but the dryer buzzer went off. I’d already hit the fluff cycle twice. Stop and fold them now T! I tried the spin cycle a few more times, but no go. After wringing out each piece of clothing and putting them in the dryer, I sat back down to the computer. What was I doing on it earlier? I better pop another K-cup in, I have lost my focus.
The phone rang and on the other end was a message regarding problems with DHS (Department of Human Services) and an old timesheet from April 2013. That’s just great. What was I going to do on the computer? Oh, that’s right I need to schedule a service appointment. Sometimes I wonder…….
Do I have ADHD?
So, here is my to-do list for the week:
Finish resource list for NADS
Schedule NIU lecture and get respite for Nick
Fill out PACT survey
Deposit Nick’s stipend checks
Write article for NADS newsletter
Research essential oils and Bach Flower Remedy
Make Nick’s visual shopping list for fridge
Get eye exam (I am completely out of contacts)
Write thank you notes
Plant flowers
Over half of the list items are related to Nick and his special needs. Managing his adult affairs has become another part time job. But, I refuse to freak out today. I’m certain that there are lots of moms *running around like a chicken with their head cut off, much like me.
I am going to follow my own advice from last week’s blog. Don’t beat yourself up T. Prioritize this list. So I made the service appointment- Check! As for the rest, I’m going to take a breath, slow down and focus on just one thing. That’s what is in my noggin this week!
~Teresa 🙂
*According to Wiki Answers: A chicken with its head cut off tends to still run around aimlessly for several minutes after death. This is because the nerves in the body are still active for a short time. The saying “like a chicken with its head cut off” is a shortened version of “running around like a chicken with its head cut off”
Blog #94~Advice for Special Needs Moms
I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way. With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?
Advice for Special Needs Moms- 5 Things I’ve learned
1. Let go of being the helpless victim. Take back control and commit yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.
2. Adopt a new attitude when you feel bogged down. How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”
3. Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.
4. Which leads right into GUILT! Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.
5. Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.
Do I follow this advice every day? Hardly, this morning I procrastinated waiting until Nick ran out of his meds before making a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….
Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.
So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy. Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.
~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!
Down Syndrome with a Slice of Autism 