Posted in Autism, Down syndrome

Blog #120~Lessons Learned on a Zip Line

Blog #120~Lessons Learned on a Zip Line

Recently on a vacation to Punta Cana in the Dominican Republic, my siblings and I decided to book an excursion to go on a zip line.  It seemed like a good idea at the time. You know something to knock off the bucket list.  That is until the crew at Runners Adventures began to strap the equipment on me.  The instructor explained the zip line course, proper technique and hand signals to watch for.  There were 12 lines total, the first few were lower.  All I had to do was make it through the first set and I could bail out.  As we climbed the stairs to the first cable, the fear began paralyzing me.

The staff person clipped the metal hooks over the double cables and instructed me to sit back, tuck my knees in, and to rest my hand on the cable and keep it relaxed.  I let go of my clenched fist and glided to the other side (and without one single scream or swear word).  The second line was a fast one, 6 seconds to the other side (oh and be sure to smile because there was a photo op).  I came down that line like a bullet and finished feeling like a crazed, adrenaline junkie.

zip line

The stairs leading up to the rest of the lines got higher and the cables were longer and more risky.  My brother in law could see the look on my face, that of singular focus. He reminded me to take time to enjoy the scenery.  I kept my hand loose soaring with ease and taking in the beautiful views. By the way, I made it through all 12 lines. 🙂

Zip line view

Later at the beach, I glanced out at the brilliant, blue Caribbean ocean reflecting on the adventure……

beach

Sometimes, we need to push ourselves way out of the comfort zone.  Doing something so scary and unfamiliar forces you to face life’s uncertainties.  I have a lot of fears regarding my son, Nick.  He is 21 years old, and has Down syndrome and autism.  I worry about his future after he finishes the post-transition program next February.  I’m uncertain about him living in a group home someday.  Who is going to insure his safety? How will I know if he was possibly neglected or abused, since he has very limited speech?  Will he think that I have abandoned him? Will he be fulfilled and loved as much as he is here at home?

Nick enjoying the hot tub on our deck……

photo (30)

I learned a few things on the zip line.  Even if you are uncertain, you have to trust that the staff has your back and just let go.  At some point, I need to loosen my grip and trust that others can take care of Nick in the future.  It’s okay to be uncertain; but those fears can hold you back, and you might miss a great ride.  In fact by relaxing my hand and letting go, I felt a spark ignite inside me. That’s what is in my noggin this week. 🙂

~Teresa

Posted in Autism, Down syndrome

Summer Break

Summer Break

Summer break

I’m taking the next two weeks off for a summer break.  There are plenty of great stories and information about Down syndrome, autism and more in the archives located on the right side as you scroll down. Dig in and enjoy them! Thank you for reading and sharing Nick’s world.  Have a great 4th of July holiday and be safe.

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick, Recreation/Leisure and Special Needs

Summer Fun

015

This week, a look back at summer fun over the years.  Nick enjoys vacations especially if there is swimming involved.  He is now 21 years old and has Down syndrome and autism.  Click on this link to view @ https://nickspecialneeds.wordpress.com/2012/06/11/blog-11the-good-ole-summertime/

That’s what is in my noggin this week.  Happy summer to everyone and thank you for reading and sharing Nick’s world!

~Teresa

 

Posted in Autism, Down syndrome

Father’s Day Tribute

Father’s Day Tribute

Daddy-O

This week,  a tribute to the men who have shaped Nick’s life along with my own. Nick is 21 years old, he has Down syndrome and autism. Nick and I wish you all a Happy Father’s Day and enjoy @ https://nickspecialneeds.wordpress.com/2012/06/18/blog-12-daddy-o/

Posted in Autism, Down syndrome

Blog #119~Autism Survival Kit

Blog #119~ Autism Survival Kit

Recently I was reading a Facebook post.  It was a poll, asking parents to name their number one necessity item needed for their child with autism.  This got me thinking what would I include in an autism survival kit?  My son Nick, is 21 years old and has Down syndrome and autism. Here is a list of 21 things that you might want to pack in that survival kit.  Note, the last 4 are MY essentials 🙂

survival_kit

  1. Rug shampoo machine
  2. Plumbers snake
  3. Paper towels in bulk
  4. Deadbolt or key pad locks
  5. Child proof locks and rubber bands for cabinets
  6. Noise canceling earphones
  7. Weighted blankets
  8. Swing set
  9. Mini trampoline
  10. Essential oils with a diffuser
  11. Chewy tubes
  12. Figit toys and stim objects
  13. Melatonin
  14. Back up iPads and iPods
  15. Laminator for PEC pictures and schedules
  16. Nail polish remover
  17. Back up clothes for trips and community outings
  18. Coffee
  19. Wine
  20. Earplugs
  21. A good sense of humor

Figit toys…..

figit toys

Transition Timer….

transition timer

Laminated PECS pictures….

IMG01 (13)

This is why I included nail polish remover….

photo (116)

School is going to be out for the summer. ESY (Extended School Year is a short day), so arm yourselves and be ready.  What is YOUR necessity item that you would add to the kit?  I’d love to hear it!  That’s what is in my noggin this week.

~Teresa

Nick sensory toys

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome

Blog #118~If You Can’t Fix It, Duct It!

Blog #118~ If You Can’t Fix It, Duct It!

duct tape

I reported two weeks ago, that Nick’s talker (AAC device) has survived being dropped from the second floor of the Naperville Library and onto the railroad tracks off Montgomery Road.  The case is sturdy but has taken a beating.  Nick is 21 years old and has Down syndrome and autism.  He’s a crafty one.  It’s all we can do to keep up with his antics.  The school team has come up with two things to secure his talker better.

ipad touch chat

First, the team has devised a bumper around the iAdapter case with foam and duct tape to absorb the impact. I’m thinking that we need to patent this prototype.

IMG_5231

In addition, Nick has it tethered securely to his body with two straps (one over the shoulder and the other around his waist).

IMG_5116 

Nick is using his talker to make requests for iPad, Sprite, food items. When he burps he pushes the buttons, “excuse me” or “that’s gross”.  The other night I was busy doing laundry and getting dinner ready.  He was getting impatient and growing tired.  He proceeded to push “stop”- “I’m tired”- “I want to eat”.  When he finished dinner, he pushed the buttons “finished” and “bedtime”.  I’ve also noticed that he is using more verbal language since getting talker 2 months ago!

At home I figured out a way to tether it to a shelf with Velcro straps in the kitchen so it’s accessible.  So, between the straps and duct tape, we are staying one step ahead of big guy (at least for now). Hey it’s Nick’s world, the rest of us are just trying to keep up.  That’s what is in my noggin this week!

~Teresa

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome

Updates on Behavior & AAC Device

Updates on Behavior & AAC Device

Nick’s behavior has been escalating over the last few months.  He is 21 years old and has Down syndrome and autism.  The incidences of throwing objects has increased.  This also includes his new AAC Device (talker). AAC stands for Augmentative Alternative Communication.  The school district’s autism specialist has done some observations of Nick and data collection of behaviors.  I did this as well at home with Nick’s behaviors.

The school team met last Friday to go over the observations and brainstorm on how to adjust his behavior support plan.  A significant amount of the behaviors are attention seeking.  The team is working on a system to reward Nick for being compliant. In addition, they will be utilizing his new AAC device to seek appropriate attention and making more requests and comments with it.  He has been throwing the device both at home and school.  The iPad is in sturdy enough case to survive a throw from the second floor of the Naperville Library as well as being pitched out the bus onto Montgomery Road at a railroad crossing.

On a positive note, he is using the device well to requests food, rewards as well as making some comments like, “excuse me” when he lets out burps.  He is learning how to navigate it with minimal prompts as well.

ipad touch chat

Nick’s behavior support plan is much like painting the Golden Gate Bridge.  Just when you think it’s all done and figured out, a new behavior pops up and you have to start over again.

paint golden gate bridge

That’s Nick’s world….. the rest of us are just trying to keep up.  That’s what is in my noggin this week.

~Teresa

 

Posted in Autism, Autism Safety and Wandering, Down syndrome

Wandering and Autism

Wandering and Autism

Wandering and autism

Spring is here, the flowers are blooming, and everyone wants to get outdoors.  Do you know a child who is an eloper?  My son, Nick who has Down syndrome and autism and he has wandered off.  It’s a parent’s worst nightmare. Here are some action steps you should take to insure their safety @https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/

Deck time, Nick and his stim objects…..

nick and tappers

Thank you for reading and sharing this critical information about wandering and autism.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Down syndrome

Autism and Meltdowns

meltdown

Autism and Meltdowns

April is Autism Awareness Month.  This week I want to focus on autism and meltdowns.  Here is a not so pretty portrait of one of Nick’s meltdowns that I have deconstructed for you.  Nick at the time was 19 years old.  He has Down syndrome and autism.  This will give you an idea of the triggers and behaviors that can occur during a meltdown.  It will also show you what I learned to try and prevent this in the future.

Click here to read @ https://nickspecialneeds.wordpress.com/2013/12/09/blog-77autism-and-meltdowns/

That’s what is in my noggin this week.  Thank you for reading and sharing the reality of autism.

~Teresa

 

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Parent Tips for Better IEP Meetings

Parent Tips for Better IEP Meetings

It’s that time of year when parents hold their breath in anticipation of IEP meetings.  IEP stands for “Individualized Education Plan”.  An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year.

brace yourself IEP

Many parents dread these meetings. I was one of those parents who did for many years.  But after 21 years I’ve learned a few things on how to make these both productive and cooperative.  My son, Nick has Down syndrome and autism.  Here are some parent tips for better IEP meetings:

https://nickspecialneeds.wordpress.com/2014/03/17/blog-88-parent…r-iep-meetings/

Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa