Tag: Respite Caregivers

Posted in Adult Day Programs for Special Needs, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #259~Nick’s Dual Diagnosis: Down Syndrome and Autism – Day Program Resumes

Posted on by Teresa Unnerstall

Blog #259~Nick’s Dual Diagnosis: Down Syndrome and Autism- Day Program Resumes

After nearly a 4 year hiatus, Nick is FINALLY back in his adult day program! The Covid-19 pandemic and subsequent staff shortages really halted these programs across the country. When these programs started back up, they did so cautiously. Many were hesitant to admit clients with higher needs. My son Nick is 30 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). I am thrilled to share with you how his transition went back to his day program.

I will admit that I’ve been hesitant to write about Nick’s return to his program for fear of jinxing it. The transition back started as a trial run with Nick going half days, 3 times a week. We worked closely with the behaviorist (BCBA) to create a smooth transition. The BCBA sent questionaires to all of the personal support workers that have been working with Nick for the past few years to get their perspectives. Social stories, daily schedules and a communication book were created to help Nick understand and navigate his new routine. All of these tools are evidenced based practices that help indidivuals with autism and other disabilities to have smooth transitions.

The BCBA did observations and took data on behaviors which led to the creation of a behavior support plan. She fully expected that behaviors would occur when Nick started back. He did test the staff as she expected, with many attention seeking behaviors. Lisa, who is Nick’s personal support worker, reminded us that he’s had her 1:1 undivided attention for nearly 4 years here at home. The new ratio of the day program is 6 clients: 2 staff per room. The class sizes are much smaller than when Nick attended before the Covid-19 pandemic, which has proven to be easier to manage and safer.

Nick gradually expanded to 5 days a week and eventually went to full day hours. The staff was commited to making it a success and he settled into this new routine very well. One key to this success was having Nick’s personal support worker, Mireya work in the room with him for the first few weeks. Here they are making greeting cards for senior citizens:

The adult day program provides a variety of activities for the clients. I sent in a few of the matching activities that Nick does at home so there was some familiarity and success with things that he is good at. Here are a few more photos of activites and jobs that he has been doing:

Nick shredding documents:

Nick pushing the cooking cart:

Nick in the gym:

Nick walking on the track:

Nick gardening:

As you can see, Nick has a full day of fun and meaningful activities at his day program. He is always excited to go each day. We are so happy that this opportunity is available for Nick and the other clients who thrive with a routine and structure. I would like to express my deepest appreciation to Nick’ personal support workers, Lisa, Mireya, Lara and Jeannette for their hard work and commitment over the past few years. Having respite care allows families to be able to work outside the home and get a break to enjoy some personal time. I also want to thank my husband, Al for taking on the bulk of driving Nick to and from his program.

I look forward to sharing more about Nick’s return to his day program in future blogs and on social media. Be sure to follow us to see more pictures and videos of Nick in action on Facebook and Instagram at: Down Syndrome with a Slice of Autism. That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #207~Special Needs Parents: Coping When Life Gets Tough

Posted on by Teresa Unnerstall

 a Blog #207~Special Needs Parents: Coping When Life Gets Tough

Let’s face it, being a parent is exhausting at times.  When you have a child with special needs, it’s amplified.  Sometimes you just can’t catch a break.  You have to walk on eggshells, and keep your cool, so your child doesn’t have a meltdown.  The physical needs your child may have can take its toll, zapping your energy levels each day and night.  Autism and sleep disorders go hand in hand. Endless nights of interrupted sleep will beat you down.  My son Nick is 24 years old, and has Down syndrome and autism.  I’ve got many years under my belt, of taking care of his needs.  I can hold it together pretty well and keep my patience in tact.  Believe me, Nick does try my patience daily.  But every once in a while it gets to be too much, especially when sleep is disrupted.

mombie

So how do you find ways to catch a break and re-charge?  I thought a lot about this over the weekend.  There are times in life where you start to get your footing, but the next thing you know, a few more hurdles block your path.  In the worst of times, when my son was going through puberty and having multitudes of meltdowns, I questioned how I was going to survive.

I repeated this mantra to myself……

winston churhill quote

Here are 7 things to keep in mind which will help when you feel stressed out…..

  1. It’s totally NORMAL to feel overwhelmed.
  2. When you do feel stressed out, seek BALANCE and prioritize what MUST be done and what can wait.
  3. Stop feeling GUILTY.
  4. Give yourself a BREAK, even if it’s a mini break to keep you at your best both emotionally and physically.
  5. Ask for HELP from family, sitters and respite caregivers. You can’t do it alone.  Delegate household chores to all family members.
  6. CONNECT with support groups who better understand what you are dealing with on a daily basis.  Being a parent of a child with special needs can be lonely.  But you know what, you are NOT ALONE.
  7. Keep GRATITUDE in your heart.  Every day look for the blessings.  The good stuff will keep your focus positive.

This weekend was very busy, and my usual Saturday catch up routine was interrupted.  That evening I was looking for a clean pair of underwear for my son.  I dug through 3 clean laundry baskets that had yet to be put away.  Not one single pair could be found.  It was late, I was tired, and it was all too much.  While Nick was in the shower, I went into the closet and started yelling, “T, you suck.”  And yes, the swear words were flying.  Nick ended up in a pair of his Dad’s boxer briefs that were on the baggy side.  I spoke into the Amazon Echo, “Alexa, put F-ing underwear on the shopping list!”  Alexa acknowledged the request, without using the expletive, as she is polite that way.

The next day, Nick went to brunch with Kelsey, his respite caregiver.  I took my own advice, and put myself first.  I also took a moment to be grateful that Nick was fully toilet trained (no easy feat), and able to wear underwear.  Before making a Wal-Mart run for groceries and F-ing underwear, I headed over to my happy place, DSW Shoes. I was loaded down with preferred customer coupons and a gift card that I got for Mother’s Day.  It was only a twenty-minute mini break, but it did me a world of good!  Oh and I came out treating myself with two new pair of cute sandals. 🙂

Being a parent of a child with special needs carries a unique set of responsibilities that can be overwhelming.  Know that you are not alone, and that it’s essential to give yourself a break without guilt.  Even in the darkest days and nights, things will get better.

So I leave you with this final mantra when you are taking on what seems to be the impossible…..

breathe chapter quote

That’s what is in my noggin this week. 🙂

~Teresa

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