Posted in Autism, Down syndrome

4th of July Holiday Break

4th of July Holiday Break

fireworks2

Hank¬†turned 22 yesterday. ūüôā 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. ūüôā

~ Teresa

 

Posted in Autism, Down syndrome, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #100~20 Tidbits about Nick

Blog #100~ 20 Tidbits about Nick

To celebrate the 100 milestone of this blog ‚ÄúDown Syndrome with a Slice of Autism,‚ÄĚ I made a list of 20 things about my son Nick.

Nick 20 years ago, what a little kewpie doll…..

Nick baby

1. Nick was born the day after his Dad’s birthday.

2. Nick was in ICU and on oxygen for one week due to an AV valve in his heart not closing. 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.

Nick high chair

6. Due to his low muscle tone (a trait of Down syndrome) he didn‚Äôt walk or eat solid foods until he was 3 ¬Ĺ years old.

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.) ūüôā

9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.

Nick Eiffel Tower

10. He has been overseas three times including London, France and Spain.

11. Nick can replicate exact sneezes.

12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.

13. Nick‚Äôs a thrill seeker and will sign ‚Äúmore‚ÄĚ as soon as a roller coaster ride is over.

14. He hates to wear hat and gloves no matter how cold it is.

Nick sled

15. Nick’s favorite actor is Eddie Murphy, followed by Will Farrell and Adam Sandler.

16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them).

raspberry

17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.

Nick Special Olympics

18. Nick was tested 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.

Nick Kiss

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.¬† Preview for next week, Blog #101~ A list of really cool things about Nick by several of his teachers.¬†Thank you so much¬†for reading and sharing Nick‚Äôs world for the last 100 blogs. ¬† That‚Äôs what is in my noggin this week. ūüôā

~Teresa

20 Year Old Nick…..

photo (120)

 

Posted in Autism, Down syndrome

Blog #99~ *Essential Oils and Sleep

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 logo

‚ÄúBach 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.‚ÄĚ

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.

bach flowers

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.

autism and sleep cartoon

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:

bach flower chart 2

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”………

Peaceful Sleep Oil

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 ¬†ūüôā ……….

aromatherapy

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‚Äôt 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‚Äôve written, it‚Äôs good to think out of the box.¬†That’s what is in my noggin this week. ūüôā

~Teresa

thinking outside the box

 

 

 

 

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #98~More Special Needs Resources

Blog #98~More Special Needs Resources

How do I even try to come close to topping last week‚Äôs blog post?¬† Ryan Solomon’s¬†story about being Nick‚Äôs 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!¬†¬†ūüôā¬†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…..

Peer Partners

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

caretrak bracelet

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)…….

golden gate bridge

That‚Äôs what is in my noggin this week. Stay tuned for more about Nick‚Äôs world next Monday. ūüôā

~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.

Posted in Autism, Down syndrome, Education and Special Needs, Recreation/Leisure and Special Needs

Blog #97~ Being Nick’s Peer Partner

 

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–‚Äźsport varsity achievements ‚Äďincluding all–‚Äźconference and all–‚Äźacademic in soccer, basketball and baseball.¬† You might think I‚Äôm 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 ‚Äď especially last year. I‚Äôve 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‚Äôs 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–‚Äźfull 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 ‚Äďbut 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‚Äôs 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 ūüôā

Peer Partners

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. ūüôā

~Teresa