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

Blog #249~DS-ASD New Year Goals

Blog #249~DS-ASD New Year Goals

Happy New Year and we hope you had a nice holiday. The Christmas decorations are packed away. Now, a clean slate is laid out for 2023. There is something hopeful about starting a new year. It’s an opportunity to re-set, make goals and resolutions. At the same time, those resolutions can often fall by the wayside leaving you feeling like a failure. I have those moments as a parent of a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 28 years old, and he lives at home with us. He has not been able to go back to his adult day program or qualify for any others. This is due to staffing shortages and the complexities of behaviors and communication deficits associated with DS-ASD. Fortunately, we have a state waiver that pays for respite care and a great team of caregivers who work with Nick. This enables us to work and enjoy leisure activities that are so important for self-care. Today, Nick completed his structured teaching activities independently as he does each day at home. These activities are part of his routine which is a great way to support individuals with DS-ASD. He is very good at them and feels accomplished.

Nick doing structured teaching activities independently 🙂

Nick has settled in covered with his weighted blanket and tappers in hand. This morning he is watching classic Thomas the Tank Engine season 3. I use to feel guilty that he wasn’t watching age appropriate shows. But now I realize, this gives him a sense of comfort, much like the Bravo and Hallmark shows do for me. So, as I write this piece these questions roam in my mind:

*What more can I do to support my son?

*How can I help him be more independent?

*What else can I do to redirect and manage his behaviors?

*Do I have the bandwidth to accomplish this, run the household and work my outside jobs?

One of the worst things about being a parent and caregiver is the guilt that we feel about not doing enough for our children. This is where I want to talk about my new years goals, and what I want to share with other DS-ASD families. My goal and hope for you this is year to be kind to yourself, by entering and exiting each day with grace. I am going to remind myself and other families that this DS-ASD journey that we are on is challenging, exhausting, frustrating and uncertain. We are going to stumble, but we also get up and do it all over again each morning. I am going to forgive myself when I am impatient, and I want you to do that too. I plan on reminding myself that deep inside the ongoing passion and love for my child is what fuels me to support and advocate for him and other families…… and I am going to remind you of this in my writing and presentations for 2023.

Let’s take a deep breath, laugh, cry and celebrate those successes together. Remember this: The fact that you are reading this blog, searching for answers and trying your best is a testimony of a good and loving parent. Know that you are not alone in this journey. May we all feel optimistic for the new year and let that hope carry us through the rough patches. The DS-ASD journey includes many stumbles and falls, but a back step can also become a cha-cha. I’ll be here to prop you up when you fall, sharing ideas, strategies, empathy, hope and encouragement. That is my passion and commitment to my son and other families on this path. Cheers to the new year and exercising self-care by being kind to ourselves.

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #216~Putting Social Stories Into Action

Blog #216~Putting Social Stories Into Action

Recently I had to take a page out of my own playbook.  I took both iPads and locked them up for an entire week.  My son, Nick repeatedly throws and drops his iPads when he is done or the battery dies.   Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  During that week, I created a social story designed to teach him how to take care of his iPads.

A social story is a visual support that helps individuals understand new events, and reinforces a desired skill, task, or behavior. They are useful for individuals that have Down syndrome, autism or other intellectual/developmental disabilities. Over the years, we’ve used social stories to help Nick navigate new situations like starting back to school, doctors and dentist appointments, vacations, and independent living skills such as showering and brushing teeth. Social stories provide a blueprint as to what will occur and what is expected from a behavior standpoint. Knowing what will happen and what’s expected, will also help to reduce anxiety.

In this case, the social story was designed to help Nick understand what is expected of his behavior, and why it’s important to make good choices.  Here is Nick’s iPad social story:

iPad social story

In Blog #214 you can read how to make a social story, click here to view:

https://nickspecialneeds.com/2018/08/20/blog-214-how-to-make-a-social-story/

Social stories should be broken down into steps using visuals and succinct wording that depict the who, what, where, when, why and how an event or behavior needs to happen.  Review the social story several times with the child before the event, new routine or behavior is to occur.

After a week with no iPads, Nick was excited to get them back.  Before this occurred I read the social story several times.  Nick followed along and pointed to the basket that he needed to put his iPads in when he was finished using them.  I made sure to stay in close proximity when he was using his iPads, to redirect him in case he decided to drop or throw them.

So, did the social story work help to curb the iPad drops and throws?  Absolutely, it reduced the incidences by 80% in just one week.  That’s a huge improvement.  Nick returned his iPads to the basket frequently, and in some cases he at least set it on the table instead of chucking it.  This indicates that he has impulse control and able to make better choices.   He received lots of verbal praises and elbow bumps for making good choices.

happy choice sad choice

Each day,  I review the social story before Nick gets to use his iPads to reinforce making good choices.  In a few weeks, I will introduce a new social story to deal with another behavior area we struggle with around the house.  Many parents of children with a dual diagnosis of Down syndrome and autism have trouble with dropping, swiping and knocking over items.  Nick’s behavior in this area has increased over the last couple of months.  This will be a tough one to tackle, stay tuned…….

Cats Earth was flat

Remember that the goal in using a social story is to teach the behavior or outcome that you are expecting from the child.  Give them a script for success for making good choices.  Keep in mind, when introducing a social story, to use one at a time consistently, before adding more.

At my son’s  adult day program, they are using a social story with positive reinforcement for making good choices.  Nick has quite a rap sheet pulling fire alarms, with over 50 pulls since third grade.  Each day, the staff reviews the social story and walk the halls with him, encouraging him to “keep walking with hands to self”.  This story was developed by myself and the ABA therapist on staff at his day program.  The story reminds Nick (using visuals again), that it’s not nice to pull fire alarms, as it scares his friends,  hurts their ears, and that it is hard for some clients to move.  If he pulls an alarm, Nick must exit the building and go next door, so he doesn’t see or hear the fire trucks.  When he makes good choices, he earns a happy face and gets a reward at the end of the day:

nick social story sprite reward for fire alarms

Not to jinx things, but so far, the fire alarm social story is working well. 🙂

The happy face visuals have been effective for Nick, and  pairing it with the idea of making good choices.  Nick likes to please, but at the same time he craves attention, and will often get it with negative behaviors.  So the focus on targeting good behaviors with the icon will be carried thru to the dropping social story in the near future.

Social stories can help guide a child to understand what will happen, where and what is expected of their behavior. It’s a great visual tool for teaching new skills and routines.  They can help to guide your child to smooth and successful experiences both at home, school and in the community.  Do you have a child that likes to swipe, drop or throw things?  What’s the most expensive thing they have destroyed?  It’s not easy, navigating a child with a dual diagnosis of Down syndrome and autism.  Working with a BCBA certified behavior therapist to develop strategies and social stories can help improve behaviors significantly.  Your child is never to old to learn and improve their behaviors.

That’s what is in my noggin this week. 

~Teresa 🙂
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