Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Self-care for special needs parents

Blog #228~DS-ASD: Parenting During the COVID-19 Crisis

Blog #228~DS-ASD: Parenting During the COVID-19 Crisis

How’s everyone doing at home during this COVID-19 Crisis? The new normal of staying at home has it’s challenges, especially when you have a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 26 years old and usually attends a daily adult developmental day training program. The structure and routine provides meaning to his life. But the Coronavirus has taken that away from him and all of us. So now what? I wish that I could wave a magic wand and show you how to navigate through this quarantine with your kids. I can only offer my perspective on parenting a child with DS-ASD this week. I’ll keep it short, because I suspect we are all overwhelmed.

Last week’s blog provided daily independent living skills ideas to work on at home with your child. Nick did great helping out and I posted daily videos of him in action on our social media sites. We will continue these living skills and also do some activity bins: Home School Activity Ideas: https://nickspecialneeds.com/tag/puzzle-and-mathcing-ideas-for-home/

I think it’s important to cut ourselves some slack right now. This is uncharted territory for all of us. 

Here are 5 things I am keeping in my noggin this week, to help navigate thru the COVID-19 Crisis:

*1-Remember to respond and not react when your child gets frustrated, bored and overwelmed. One of the lessons I offer in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (forthcoming May 5th and available now for pre-order on Amazon) is the following: “Remain calm and matter of fact. You must be a constant in a sea of uncertainty”

*2-Do what you can and don’t beat yourself up. This isn’t the time to put pressure on yourself to play all the roles of a teacher, OT, PT, speech and behavior therapist. Take this opportunity to have fun with your kids and naturally build in learning and interaction around activities that they enjoy. We’ve been turning off Fox News and CNN and instead, snuggling under a blanket and watching old movies that Nick and his older brother Hank enjoyed growing up.

*3-Get some exercise! As a 35 year fitness professional I promise it will boost your immune system and elevate your mood. Go Noodle learning stations has some fun, free movement videos you can do with your kids: https://www.gonoodle.com

*4-I keep reminding myself that we are all in this together and that gives me comfort. It also helps me to tap into a memory that I’ve personally suffered through a lot worse. In August of 1983, Hurricane Alicia left us paralyzed and without electricity for 2 long, HOT weeks down in Houston, Texas. Oh, and thank goodness for humor and all the funny memes being shared on social media 🙂 

*5-What am I doing today to make things better for myself and others? 🙂

daily quarantine questions

So, these are the 5 things I am keeping in mind to navigate what appears to be a marathon of social isolation during the Coronavirus crisis. I wish each of you wellness and peace in your homes with your family and plenty of toilet paper for all. We can do this, we’re all in this together!

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

~Teresa 

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Twitter @tjunnerstall

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

Blog #227~Daily living skills you can work on at home with your kids during the COVID-19 Crisis

Blog #227~Daily living skills you can work on at home with your kids during the COVID-19 Crisis

So, your stuck at home with your kids during this COVID-19 crisis, now what? This is actually the perfect time to work on daily living skills with your kids. Why are these skills important to know?

Let’s go back to the purpose of the Individual Education Plan (IEP):   To promote further education, employment and independent living skills.

Often, in our busy lives it’s easier to skip over teaching daily living skills on a consistent basis with our kids. So now that time has slowed down, why not take a few of these skills and hone in on them? Not only will this help your child become more independent, it will also promote confidence, family teamwork and as a bonus– many skills provide sensory input. My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years we have built in many daily living skills into his routine at home.

Here are a few of the jobs that Nick does around the house and how they provide sensory input:

*Recycling (replacement behavior for throwing)
*Can crushing (sensory and motor activity and replacement behavior for throwing)
*Carry laundry basket and load washing machine (heavy work/ organizing)
*Put away groceries (organizing activity)
*Empty Dishwasher (organizing and sensory activity)
*Cleaning/ wiping down countertops and windows (organizing activity)
*Vacuuming (heavy work which is calming)

 

The following link below is a full list of daily living skills in the areas of self-care, personal hygiene, kitchen skills, home management skills, to name a few. Focus on one or two skills at a time. You can access visuals and task strips off of Google Images and videos on YouTube:

https://learningforapurpose.com/2019/09/01/the-best-functional-life-skill-resources-for-individuals-with-autism

This is a time of uncertainty and anxiety levels are running high for all of us. First of all breathe, our kids take cues from how we are reacting during this crisis. Next, cabin fever is a real thing, so try to enjoy each other and find ways to work together at home. This will benefit the whole family. Give you kids a sense of purpose and foster new skills to bolster their confidence. This will help them grow to become more independent. Be well and don’t forget to keep those iPads charged 🙂

One last thing– World Down Syndrome Day is this Saturday 3/21– Here are 3 easy ways that you can help promote awareness, acceptance and inclusion: https://nickspecialneeds.com/2018/03/19/blog-200world-down-syndrome-day/

That’s what is in my noggin this week,

Teresa 🙂

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Follow Nick to see even more daily living skill activities and videos:

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Twitter @tjunnerstall

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Behavior/ ABA, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan)

Blog #226~Beyond Down Syndrome: A New Course

Blog #226~Beyond Down Syndrome: A New Course

World Down Syndrome Day is coming up on March 21st. This day 3/21 was chosen to represent Trisomy 21, where there are 3 copies of the 21st chromosome. WDSD highlights the importance of promoting awareness, understanding, inclusion and acceptance for individuals with Down syndrome. Next week, I will provide concrete ways that you can help promote WDSD.

But what if there is more beyond Down syndrome that families are facing? Did you know that approximately 18% of children with Down syndrome have a secondary diagnosis of autism? This dual diagnosis of Down syndrome and autism (DS-ASD), presents additional challenges with communication impairment that can lead to behavior problems.

Here are some of the signs and symptoms from the National Down Syndrome Society (NDSS) of a dual diagnosis of DS-ASD:

https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

My son Nick, is 26 years old and has a dual diagnosis of DS-ASD. Ten years ago, I started writing about my journey and this new course our lives took, when Nick got a secondary diagnosis of autism. I felt very alone. I found myself pulling away from our local Down syndrome support group activities, because my son no longer fit in. He did not engage like his peers with Down syndrome. His repetitive movements (rocking, hand flapping, unusual play with toys) and vocal humming sounds made him stand out from the crowd. This new course was different than the one I planned. Nick was very delayed in toilet training and his speech deficits lead to behavior problems. As he approached puberty, his lack of speech and understanding what was expected, led Nick to become very frustrated. My son had no voice and his actions led to dangerous meltdowns.

What I soon learned (when Nick was 10 years old), is that I dealing with way more beyond Down syndrome. There was no way that I could navigate this course alone. Once I sought guidance from experts, we were able to give Nick a voice using a picture exchange system (PECS). Together with the IEP team, we determined what behaviors to target and developed a positive behavior support plan (BSP). The two key components that helped Nick was giving him a voice and finding the triggers that were causing behavior problems. We sought help from the school district’s autism specialist. The IEP team then, put supports in place and we all received training to help support the secondary diagnosis of autism. It is critical to identify target behaviors, and make a game plan to support a child before they escalate to a boiling point and have a meltdown. It’s imperative to write in additional supports to address communication including visuals  into the IEP. A reoccurring theme in my blogs is the need to address speech and behavior collectively, as all behavior is a form of communication. Visuals are key for communication, but also for navigating daily life in the form of picture schedules, social stories and learning tasks. These visuals are the blueprint for your child to understand what is going on and what you are expecting from them, and in turn helps to reduce anxiety levels.

My mission for the past ten years has been to make this DS-ASD journey easier for families following a similar path, and to open the eyes for other’s to understand the complexities and challenges associated with DS-ASD. This path that I’ve been on with Nick has not been easy. Early Intervention after birth and over the years, was critical to helping Nick reach developmental milestones. Our family has weathered a lot of storms, but with each– the sun came back out and we learned a lot along the way. Now, I am ready to share my journey with you!

 I am pleased to announce my book and the journey beyond Down syndrome:

TU_5-5x8-5_WPS_ebook

A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launches May 5, 2020 and takes a deep dive into the complexities of what many families face raising a child with a dual diagnosis of DS-ASD. None of us can escape life without challenges. We each have our own journeys and individuals with DS-ASD are unique and may not be as severe as what we experienced with Nick. Our struggles at times were unsurmountable. But if you are an avid reader of my blog– you know that I’ve guided you down a path and showed you how Nick has become the best version of himself given a dual diagnosis of DS-ASD. Each chapter concludes with a 3:2:1 (3 Lessons I learned, 2 takeaways to use in the future and 1 question or concern I had during that particular time). At the end of the book, I’ve included my version of an appendix, with the final lessons I’ve learned on this journey. These final lessons are taken from my blog entries, that I’ve been writing since 2012.  A New Course is available for pre-order now on Amazon!

My passion is helping other families navigate this new course beyond Down syndrome. As a DS-ASD consultant, I am determined to assist families to find resources, offer support and guidance to make their journeys smoother. I hope my story opens the reader’s eyes and starts a conversation of what it is like to raise a child with the unique challenges associated with DS-ASD. In doing so, perhaps the reader might gain better understanding, awareness and compassion for families dealing with DS-ASD and other complex special needs.

That’s what is in my noggin this week.

~Teresa 🙂

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Follow on Social Media:

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Join us on our new Facebook Page: A New Course Book Launch to get the more inside the scenes and exclusive tidbits about A New Course: A Mother’s Journey Navigating Down Syndrome and Autism.

Twitter @tjunnerstall