Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #241~ DS-ASD in Praise of Caregivers

Blog #241~DS-ASD In Praise of Caregivers

November is National Family Caregivers Month, it is a time to recognize and honor caregivers across the country. Did you know that there are over 65 million Americans caring for aging and disabled loved ones in the US? My son, Nick has a dual diagnosis of Down syndrome and autism (DS-ASD). We are very fortunate to have wonderful caregivers to support him. This allows us to work, get out and enjoy activities outside the home.

The needs of individuals with DS-ASD are complex and behaviors can be challenging. It can easily burn out family members trying to manage it all alone. Families can access funding for respite care by checking to see if their state has a Medicaid waiver or other programs for individuals with a disability.

For more information click here:

https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html

I want to honor the amazing caregivers who work with our son, Nick. He enjoys their company at home and out in the community. The Medicaid home and community based service plan here in Illinois pays personal support workers who also work on goals for Nick to keep up with his skills and communication.

Nick and Miss R.
Nick and Miss R. at the pumpkin patch
Nick with Jodi and Kelsey
Nick is a bit smitten with Kelsey
Nick and Lisa

As I mentioned earlier, Nick enjoys their company. On many occasions he will grab pictures of the caregivers out of his Picture Exchange Communication System (PECS) book and hand them to me. A PECS book helps Nick to communicate his wants, needs and feelings. Individuals with DS-ASD can benefit from using pictures to express themselves. It is very evident that Nick loves each of them and they have all become part of our family.

Thank you to Miss R., Jodi, Kelsey and Lisa for your love and support. We praise all that you do for Nick and our family. We honor you this month and every day of the year! That’s what is in my noggin this week.

~Teresa 🙂

For more information and link to my book: https://amzn.to/2W3Un6X

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

Nick’s World Update

 Nick’s World Update

Have you settled into 2017 yet, after the busy holiday season?  I’m so happy to be back to share Nick’s world with you!  Nick is 22 years old, and has Down syndrome and autism.  Here are some of the highlights of Big Guy’s holiday fun.

We spent the holidays at home, here in Chicago. Nick enjoyed seeing family.  He’s always happy to see his brother, Hank and share elbow bumps!

nick-and-bro-x-mas

Kibbie had a very “Meowy Christmas” 🙂

kibbie-stockings

Nick was excited to get a new iPad mini.  The new Big Grip case for the iPad mini is called the Big Grip Tweener.  It is much slimmer, more age appropriate in design, and best of all still protects as well as the original Big Grip case.

big-grip-tweener

Nick relishes a nice reflective bag almost as much, as his new iPad mini 🙂

nick-red-bag

Over the holidays, we entertained family and friends.  Nick is use to a certain schedule in the evenings.  It can be tricky to get him to stretch out the time, once the sun goes down. He was very patient and social during happy hour, and a leisurely dinner.  Inevitably, once the meal is over, he wastes no time.  He springs up, grabs his Little Debbie snack cakes and evening meds, then sets them on the kitchen island.  After dessert, he will beeline upstairs, strips off his clothes and is ready for a shower.

beelinne-pic

At the family gathering,  we tried stalling him while the desserts were being passed and the coffee was brewing.  I made the mistake of setting the Swiss Cake Rolls and meds off to the side for just a few more minutes.  Nick would have no part of this, and let it be known.  He took his iPad mini and did a huge karate chop right into the……

nick-pumpkin-pie

Nick was done!  We deflected the incident with an “uh-oh” comment and swiftly got his snack cakes back, to avoid a meltdown.  Sometimes, you have to compromise on your holiday schedule, and respect your child’s need to keep a consistent routine.

After the holidays, Al and I went on his company’s year in trip incentive to Costa Rica.  Nick was in very good hands with his respite care giver, Jodi. There was a good amount of logistics to do when leaving your child with a caregiver.  We put together temporary custody, child care and medical authorization agreements along with a detailed schedule.  In addition,  I prepared a social story so that he could see the change in routine and his schedule.  Here it is in part, below.  Social stories help to give the blueprint for understanding schedules and what each day will bring.  For more on using visual schedules, check out my last post, Blog #164~Why Use a Visual Schedule?

costa-rica-social-story

Nick had so much fun with Jodi going out to eat and hanging out at home. His other respite care giver, Miss R. also took him out over the weekend. We are blessed to have such caring, capable, and patient women to take such great care of Nick.

Want more pictures and videos of Nick?  Check out our social media sites. Follow Nick: Facebook @Down syndrome With a Slice of Autism, Instagram  #nickdsautism, Twitter @ #tjunnerstall

nick-taco-bell-new

All in all, the holidays and extended vacation afterwards went smoothly,  with only a dented pumpkin pie, and a few more attention seeking behaviors.  Most of these included higher incidences of dropping/ throwing things, turning water faucets on, and peeing on the floor next to the toilet.  Those behaviors are to be expected with busy holiday meal and house preparations,  a house full of company, and changes in routine.

Oh, one more thing, Nick managed to pull another fire alarm on  Friday the 13th. That is, the ultimate attention seeking behavior!  Tally count is now at 43 pulls since third grade. Hey, it’s Nick’s world, the rest of us are just trying to keep up.

Here’s to getting back to a regular routine and settling into 2017.  That’s what is in my noggin this week.

~Teresa