Posted in Autism, Down syndrome, Fun Side of Nick, Uncategorized

Merry Christmas and Happy New Year

Merry Christmas and a Happy New Year

PC020073.JPG

We wish you all a very Merry Christmas and a Happy New Year.  Thanks for reading and sharing Nick’s world.  A new blog coming in two weeks!  In the meantime be sure to check out our Facebook page (Down syndrome with a Slice of Autism) for daily pictures, articles and other musings.  And there are plenty of blogs to read in the archives. 🙂

Cheers,

Teresa

Posted in Autism, Down syndrome

Columbus Day

Columbus Day

Columbus Day

Nick is home today for Columbus Day holiday. I’ve decided enjoy the day with him instead of trying write.  Be sure and check our Facebook page, “Down Syndrome With A Slice Of Autism” for daily posts including informative articles, musings, fun pics and videos of Big Guy, Nick!

Have a great week!

Teresa and Nick 🙂

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

Blog #124~Sports and Your Special Needs Child

Blog #124~Sports and Your Special Needs Child

Having a child with special needs and finding sports and leisure activities that suit their level isn’t always easy. My son Nick is 21 years old and has Down syndrome and autism. Nick has participated in Special Olympics, Top Soccer, and Challenger League Baseball programs.  Today I want to highlight the baseball program (The Challenger Division).

Special Olympics (http//www.specialolympics.org)

Nick stands on the top of the podium winning  the Illinois State Gold Medal in the softball throw….

Nick Special Olympics

Top Soccer (http//www.usyouthsoccer.org/programs/topsoccer)

Nick Top Soccer

Baseball-The Challenger Division http://www.littleleague.org/learn/about/divisions/challenger.htm

“The Challenger Division was established in 1989 as a separate division of Little League to enable boys and girls with physical and mental challenges, ages 4-18, or up to age 22 if still enrolled in high school, to enjoy the game of baseball along with the millions of other children who participate in this sport worldwide.  Today, more than 30,000 children participate in more than 900 Challenger Divisions worldwide.

Teams are set up according to abilities, rather than age, and can include as many as 15-20 players. Challenger games can be played as tee ball games, coach pitch, player pitch, or a combination of the three.

One of the benefits of having a Challenger Division is that it encourages the use of “buddies” for the Challenger players. The buddies assist the Challenger players on the field, but whenever possible, encourage the players to bat and make plays themselves. However, the buddy is always nearby to help when needed.”

Nick challenger league

Nick would hit off the tee and a volunteer buddy would help him around the bases. It was a great experience. Check out our Facebook page called “Down Syndrome With A Slice Of Autism” to view a wonderful video about The Challenge League. Or go to this link to see more @http://videos.littleleague.org/video/2015/09/09/What+the+Challenger+Game+means+to+Little-wzODBndzpy

I highly recommend looking into sports programs for your child with special needs. The Challenger League was a wonderful program to be involved in. Play ball, that’s what’s in my noggin.

~Teresa 🙂

 

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

Blog #116~A New Talker for Nick

 

Blog #116~ A New Talker for Nick

Nick has a new talker!  The SETT meeting team looked at Nick’s needs as a student along with his environment, tasks he does and what tools would be needed to help him effectively communicate. Nick is using an iPad with the Touch Chat program.  This Augmentative and Alternative Communication device (AAC), is bigger and the buttons are much easier to push.  It has more keys on the home page making it easier for him to navigate.  Each team member went through a training orientation on the device to learn how to sift through the keyboard and customize it to suit Nick’s particular needs.  Nick is 21 years old and has Down syndrome and autism.

Nick’s new AAC Device….

ipad touch chat

Nick’s speech therapist introduced the device at school.  He was very excited along with his peers during group.  The first thing they did was to take a “selfie” of Nick (and he pressed the button) to add his photo to the personal page.  This page also includes his age, the town he lives in and that he has a cat named Kibbie and assisted in getting Nick to “buy in”.

Kibbie 🙂

Kibbie

At home, Nick navigated through the keyboard very well.  Here are some of the requests and comments he made:

*Nick pushed pulled out juice box and requested juice on talker

*Nick pushed “baseball” and walked to cabinet where they were pointing (wanting his can of tennis balls)

*Nick pushed “tired” before laid down for a nap

*Nick pushed “salami and cheese”, after nap and then pushed “soda”

*Nick pushed “salad” “mashed potatoes” as he unloaded dishwasher

*Nick pushed “phone” after his dad got off the phone to his parents and pushed Grandpa/Grandma

*Nick pushed “bathroom, shave, shower” while waiting for dinner

*Nick pushed “dessert”-Cake after dinner

We are off to a good start with Nick using the AAC device.  The iAdapter case is pretty rugged, Nick’s already thrown it a few times (shocker right).  However the stand that props it up has broken after taking a few hits. When he is in a throwing mood, I tuck the device out of sight so it won’t be damaged further. One thing I noticed right away was how territorial he was with it. He also found his way through the keyboard better than I thought he would.  At one point he pushed the category called “Groups”.  Then, he hit “Jobs” and found the “Firefighter” button which he hit a dozen times.  You can view a video of this on the Facebook page: Down Syndrome with a Slice of Autism.  By the way, why is there a “Pirate” is a button in the “jobs” category?  🙂

Nick fell asleep with it on the couch the first night….

Nick touch chat

Stay tuned for more about Nick’s communication device.  That’s what is in my noggin this week. 🙂

~Teresa

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #105~ Furry Friends and Special Needs Families

Blog #105~ Furry Friends and Special Needs Families

I wish that my iPhone camera was set to video last Friday. Nick came home from school and he was so excited to hear a tiny meow.  We adopted a new kitten from the shelter.  His face just lit up.  He was so excited and delighted saying, “Yay, kibbie!”  (That is how Nick says “kitty”)  Nick has Down syndrome and autism.  He also has verbal apraxia so his speech is limited.  Yet, I am always amazed at some of the words he says. Many are things that he is passionate about. Here are a few: Taco Bell, McDonald’s, Sprite, cake, shower, Harold -from Thomas the Tank Engine, and yes….. a couple of expletives as well.

In Nick’s communication book he has many picture icons to request things and share his feelings. On many occasions, Nick has handed me these two icons paired together………

Mellie Sad Icons

We had to put down our 17-year-old cat last summer. Miss Mellie was such a big part of the family. Nick had a lot of fun with her over the years.  I’ve dedicated several blogs about their relationship……

https://nickspecialneeds.wordpress.com/2012/12/03/blog-33-stuff-on-my-cat/

https://nickspecialneeds.wordpress.com/2013/07/08/blog-62stuff-on-my-cat-part-ii/

https://nickspecialneeds.wordpress.com/2013/08/05/blog-63furry-family-members/

Here is a hint of what you can find on the blogs above……Splat!

photo (112)

Despite all the mischievous things Nick has done, Miss Mellie would still snuggle up with him……

IMG-20121123-00001

Our new kitten is a sweet tabby as well. She’s 5 months old, loves to cuddle and has a nice deep purr.  She is spirited yet not destructive, and even plays fetch!  I’ll post some footage of her fetching on The Facebook page, “Down Syndrome with a Slice of Autism” this Friday.  Nick has been swinging some of the wands that dangle cat toys for her.  He is a little skittish when she wants to rub up around his legs.  But otherwise, the two are getting along nicely.

Introducing the new furry family member……

Kibbie one

So, you may have noticed that I haven’t mentioned her name yet. We are taking a few days to observe her personality and see what suits her.  Nick’s brother (Hank), came in from NIU to meet her and brainstorm names.

Hank and kitty…..

Hank and Kitty

I think she is settling in nicely….

Kibbie Two

I posted pictures on Facebook on Friday. My friend Kendra, suggested naming the kitten the first thing that Nick puts on her. Well if we do that, her name thus far would either be “Sneezy” or……….

Snots!!!

snots the dog

I look forward to sharing more about Nick and the adventures of our new furry family member. Stay tuned for the announcement of her name. And in the meantime, I’ll keep the shaving cream and fajita seasoning locked up.  That’s what is in my noggin this week.

~Teresa 🙂

 

Posted in Autism, Behavior/ ABA, Down syndrome, Uncategorized

Blog #93~Down Syndrome & Autism and Getting Help

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……

Nick 2 (2)

The children’s program also has music therapy.  Here’s Nick jamming last Saturday……..  🙂

nads retreat music therapy

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:

  1. Getting respite care and funding for it.
  2. Teaching
  3. Behaviors
  4. Parental and family stress
  5. Dealing with systems.

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) 🙂

cropped-lemon-one.jpg

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!like button

 

 

 

 

 

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #75~ 5 Reasons I am Thankful for Nick

Blog #75~ 5 Reasons I am Thankful for Nick
thankful
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:

IMG01 (6)

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”.

like button

Here’s Nick’s signature elbow bump, (his version of a high five) with his Dad and Aunt Laura  🙂

IMG02

He’s got that look on his face like, I’m going to grab your wine)  🙂

IMG01 (3)

What a jokester, hardy har har Nick……

photo (40)

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.

photo (33)
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

snoopy thanksgiving