Just another WordPress.com site, Here to help you navigate co-occurring Down syndrome and autism. My son, Nick is 30 years old and living his best life as an adult with DS-ASD.
The challenges faced by individuals with co-occurring Down syndrome and autism (DS-ASD) are complex. These can include communication deficits, cognitive delays, sensory processing issues and rigidity. Transitions can be tough, moving from one activitiy to another, changing venues, staff and caregivers can all be stressful. Predictability and consistency are key components which help individuals with DS-ASD cope in a world that moves fast. My son Nick is 29 years old, and has co-occurring DS-ASD. Many of the families that I’ve worked with over the years find transitions to be hard to navigate. There are many evidenced based practices which can help support your child.
Here are 5 Tips for Taking on Transitions:
1. Figure out “the why”. Do a little detective work to determine what might be triggering the resisistance to moving forward. Possible antecedents might be sensory overload (loud noises, crowds, etc), changing from a preferred activity to a non-preferred activitiy, not understanding what comes next and not feeling in control. These are just a few examples of why they might be struggling. Once you determine the function of the behavior, then you can put some supports in place.
2. Use a visual schedule to help provide an effective cue to move to another activity or venue. There are many apps available as well including First-Then, Kids ToDo List, and Visuals2Go.
3. Allow for processing time. Give advance notice when an activity is coming to an end, and when it will be time to move to the next. Visual timers are great tools to help with transitions. Here are two of my favorite timer apps which include the Countdown Timer and Timed Timer:
4. Create a social story to help provide a clear and predictable framework for what will happen next, what to expect and how navigate a new experience. Use the social story like a pre-game rehearsal. This allows the individual to understand what to expect, how to behave and give them a “buy in” to the transition.
5. Give verbal and non-verbal praises and provide a reward such as a transition object to help motivate the child. “Good job walking and staying close”, thumbs up/smiley face icons, high fives can all reinforce successful transitions made throughout the day. Transition objects guide the child over the bridge that encourages moving from point A to point B. The object should be highly preferred, motivating and limited access so that it keeps their interest.
Providing support for individuals with DS-ASD to assist with transitions can ease stress by helping them understand what will be happening throughout the day. It also allows the child to feel more in control over their life. For more information and tips on navigating co-occurring Down syndrome and autism, scroll the archives of this blog and check out my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism click to order here: https://amzn.to/2W3Un6X
That’s what is in my noggin this week 🙂
~Teresa
Follow us on social media: #Down Syndrome with a Slice of Autism
Blog #256~Guest Blog: 10 Pillars of Independence Made Simple, by Steve Friedman
As National Family Caregiver Month comes to a close I want to highlight a great resource for families having a loved one with Down syndrome and DS-ASD. Steve Friedman has written an excellent book to help caregivers navigate future planning with an emphasis on helping your loved one become as indepedent as possible. As a parent to my son Nick who is 29 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD), my concerns in the area of future planning are at an all time high. I found the information and book that Steve wrote very helpful.
10 Pillars of Independence Made Simple by Steve Friedman
It’s never too early nor too late to make a plan!
Whether your loved one with Down syndrome is 1 or 51, contemplating independence can be overwhelming.
*What does independence actually mean to you and your family?
*What are your options for independence pillars such as education, work, and housing?
*How much does independence cost and what benefits may help?
*How do we find out about all benefits and how do you apply for each?
*What are the important legal documents and how/when do I consider them?
*What health issues should be considered for your self-advocate’s future?
It’s a lot!
10 Important Pillars to Consider
1) Mindset – In the past, the shock of newborn parenting led to a world of limitations and protection. But now people with Down syndrome are working meaningful jobs, going to college, they’re having deep relationships, and living on their own. It is time to believe in the possibilities for our sons and daughters, for ourselves, and for our communities!
2) Independence Team – always put your loved one first. Insist they are at the ARD meetings. Be sure the doctor is talking TO them, not around them. This is important for their self-esteem and it’s their lives, after all.
YOU are the NEXT most important member of the team. You know your son or daughter best. Advocate for THEM – not for you – every day. Include others in your team that can provide support, challenge, and perspective like teachers, doctors, therapists, extended family, and those angels that somehow find us along the way.
3) Work is a great self-esteem booster. I’ll never forget Gwendolyn’s beaming face when she started her first job. She still lights up when talking about work with friends and family. Utilize government resources to find a job but if that fails, and it might, create a resume and march out and talk to friends and local businesses until you find the right fit. Remember, you are not offering a charity, you are offering a hardworking, energetic team player.
4) Keep learning…beyond high school. Our loved ones have a long runway of learning. But if they stop, if they go home and sit on the couch all day, they will stop learning. They’ll plateau and they’ll regress. Continuing education, whether through a quality day program, inclusive college program, or homeschooling-style exposure, is critical.
5) Know common health issues for adults with Down syndrome. In our book we talk about 7 – all of which people with Down syndrome are AT LEAST twice as likely to get as the general population and, in some cases, 7x more likely. These include sleep apnea, obesity, celiac disease, hypothyroidism, depression, Autism, and Alzheimer’s. Many of these are genetic and not preventative, but you can still be prepared. Others benefit from healthy habits from an early age. In all cases, the earlier you are aware of these and work with your doctors to diagnose and treat these, the better life you offer your loved one. Oftentimes, even the best doctors will attribute symptoms to Down syndrome without digging deeper to identify specific health issues they can treat. We need to be sure to educate ourselves and our doctors.
6) Benefits are perhaps the biggest mystery of all. Until now, there’s not been a place to find a full list, understand how to qualify and where to apply, and just as importantly, how to maintain eligibility. In my discussions with parents, it never failed that they were unfamiliar with at least one of these benefits. Independence is beautiful…and independence is expensive. Are you on a Medicaid waiver program or waitlist? Do you know about SNAP or HIPP? Be sure your son or daughter gets all the benefits they deserve.
7) Did you know your son or daughter with Down syndrome is due Social Security benefits whenever either parent is either disabled, retires, or passes away? These benefits can be significant and typically don’t compromise the parent’s benefits in any way. But you must be aware of your loved one’s income and asset limitations in order to maintain eligibility. A wrong step, even if unknowingly, can cost your family hundreds of thousands of dollars! These same limits can jeopardize their own SSI and Medicaid, so be aware!
8) Guardianship is a major topic when our loved ones reach 18. I know this can be a controversial issue. On the one hand, we want to provide responsibility and authority to our self-advocates so why spend the time and money in court to take guardianship away from them? On the other hand, if they don’t have a legal guardian, they may have to make all critical decisions themselves. That includes some of the complex financial decisions we just touched on as well as health decisions, often in times of illness. In those circumstances, they can ask for your advice, or they can choose not to, or be convinced by others not to consult the parents altogether. And if others don’t feel your loved one can make the best decisions in a time of need, they can bring the state in to counsel your loved one. These decisions are just too complex for any one person in our family. We want to make sure Gwendolyn’s health and financial well-being are best protected. We are sure to include her in meetings and decisions that affect her, but we maintain guardianship. If you haven’t considered guardianship in detail, it is never too late to do so.
9) There are other legal instruments you should be aware of to protect your loved one’s benefits, including Special Needs Trusts, ABLE accounts, and letters of intent. Look into each one of those.
10) Finally, consider your housing options. We never thought about it much. We assumed Gwendolyn would always live with us. We were a bit ashamed to even consider her not living at home. But then, we realized three critical items:
a. We recognize that the best way for Gwendolyn to learn and grow was to explore moving out from under our protective umbrella just as her brother and sister have done.
b. We found there is a wide variety of options from small to large, public to private, admittedly shady to absolutely awesome. We just had to invest the time in the process to find the RIGHT place for Gwendolyn.
c. Finally, we recognize we will not be able to provide Gwendolyn with the best environment as we age so rather than leave that to chance, we wanted to be part of her housing choices.
There are a wide variety of housing options today. We did a lot of research –visiting over 15 places across Texas before we found the right place for Gwendolyn. Our loved ones are living longer and wanting more. Consider your housing options today.
The Essential Guide for Families with Down Syndrome was created to remove the mystery.
“This book is essential for ALL parents, guardians, loved ones, and direct support professionals who care for a person with a disability.” -Tracy Keninger, Easterseals Iowa
“This is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” -Tara Goodwin, Parent and DO, QuestCare Medical Clinic Dallas
“This practical guidebook lays out the critical steps for building independence. Steve Friedman provides comprehensive planning tools, paired with thoughtful parent perspectives. This is a great resource which covers all areas of life for individuals with Down syndrome along with their families.” -Teresa Unnerstall, DS-ASD Consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism
The Essential Guide provides step-by-step support to:
*Inspire mindset shifts toward one of independence and possibilities
*Foster independence building blocks from the earliest age
*Highlight health risks and financial resources every family must know
*Detail educationand work optionsto promote community inclusion
*Evaluate family-and community-based homeoptions includingsearch process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer’s disease. Did you know that 12% of the US population will be afflicted by Alzheimer’s but 95% of the Down syndrome community will have Alzheimer’s by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
Steve Friedman BIO
The Friedman Family has always been tight-knit. Everyone supports each other including oldest daughter, Gwendolyn, and her quest for success. After Gwendolyn graduated high school, she became uber-focused on all facets of independence from continuing education, work, moving out, and self-advocacy. Over the past ten years Gwendolyn has achieved many of wishes and the family documented steps and resources along the way. Steve is a three-time award-winning author who loves to connect with families on his website and with podcasts and engaging workshops.
Thank you to Steve Friedman for the great information on this guest blog which will help many families and caregivers. For more information and to purchase a copy of his book click here: https://www.beyonddownsyndrome.net/
Blog #255~Down Syndrome Awareness Month: Extra Good Reads
October is Down Syndrome Awareness Month. My son Nick is 29 years old and has a dual diagnosis of DS-ASD. I’ve been writing this blog since 2012, to help educate and inspire families and professionals.
This week I want to highlight some good reads related to Down syndrome. There are many books on Amazon available with a variety of topics related to Down syndrome. Here are a few books that I highly recommend, that will both educate and inspire you.
Extra Good Reads about Down Syndrome:
A New Course: A Mother’s Journey Navigating Down Syndrome and Autism by Teresa Unnerstall order here: https://amzn.to/2W3Un6X
The Essential Guide for Families with Down Syndrome: Plan and Actions for Independence at Every Stage of Life by Steve Friedman Order your copy here: https://a.co/d/gMxuiU3
A Parent’s Guide to Down Syndrome, Advice, Information and Support to Raising Your Child from Diagnosis to Adulthood by Jen Jacob and Marda Sikora. Order here: https://a.co/d/5CRwU6R
Supporting Positive Behavior in Children and Teens with Down Syndrome, Revised Edition, The Respond, Don’t React Method by Dr. David Stein, Psy.D. Order here: https://a.co/d/8rlEeJG
Down Syndrome Parenting 101: Must Have Advice for Making Your Life Easier by Natalie Hale order here: https://a.co/d/7LebF7H
Babies with Down Syndrome: A New Parent’s Guide, Edited by Susan J. Skallerup order here:https://a.co/d/bU6CyTv
Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis order here: https://a.co/d/3QMtl0w
Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality by Terri Couwenhoven, M.S. order here: https://a.co/d/gARb2kE
Fine Motor Skills for Children with Down Syndrome, A Guide for Parents and Professionals (third edition) by Maryanne Bruni, BScOT (Reg) order here: https://a.co/d/8au2far
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals by Patricia C. Winders, P.T. order here: https://a.co/d/9F4DUV4
Gifts: Mother’s Reflect on How Children with Down Syndrome Enriched Their Lives, Edited by Kathryn Lynard, order here: https://a.co/d/fJ4ZgAj
Gifts 2: How People with Down Syndrome Enrich the World, Edited by Kathryn Lynard Soper, order here: https://a.co/d/5ltSrSH
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges by Dennis McGuire, Ph.D. and Brian Chicoine, M.D. order here: https://a.co/d/cbOhBLC
Different A Great Thing to Be by Heather Avis and Sarah Mensinga, order: https://a.co/d/3VL4z16
You Are Enough: A Book About Inclusion by Margaret O’Hair and inspired by Sophia Sanchez order: https://a.co/d/hRsKJAu
My Friend Has Down Syndrome by Jennifer Moore-Mallinos, order here: https://a.co/d/aSRCijS
These Down syndrome good reads are excellent resources for parents, families and professionals. Keep them in mind as gifts for the upcoming holiday season. In addition, many local Down syndrome support groups across the country provide lending libraries with these resources for families. Thank you for sharing and supporting us as we raise awareness and acceptance to celebrate Down Syndrome Awareness Month.
That’s what is in my noggin this week.
Teresa 🙂
Follow us on Facebook and Instagram at Down Syndrome with A Slice of Autism
Blog #254~Down Syndrome Awareness Month: Supporting Down Syndrome Businesses
Individuals with disabilities often struggle to find meaningful and competitive employment opportunities as adults. Many families think outside the box to create business opportunities for their loved one with Down syndrome. This week, I want to celebrate Down Syndrome Awareness Month by highlighting some of these business owners. As a mom to my son Nick age 29, who has a dual diagnosis of Down syndrome and autism (DS-ASD), I am a fierce advocate for indidviduals with disabilities. These are a few of my favorites that I have supported over the years.
*Candidly Kind: Grace’s mission is to to spread light love and acceptance thru her original art and life including t-shirts and lots of swag gear. https://www.candidlykind.com/ Here’s a photo I took with Grace at the NDSC convention and along with my son, Nick modeling one of her designs:
*John’s Crazy Socks: “Their mission is to show what is possible when you give someone a chance”. Every day, we demonstrate what people with intellectual disabilities can do.” https://johnscrazysocks.com/
*Brittnay’s Baskets of Hope: “As part of our mission, we make and deliver baskets to celebrate the arrival of babies with Down syndrome that feature information and guidance for the parents and gifts of love and joy for the babies and their siblings”. https://www.brittanysbasketsofhope.org/ Follow her on social media to see all the beautiful babies that she highlights daily.
21 Pineapples Shirt Company: Nate is on a mission “To change the way others perceive people with Down syndrome & other special abilities one Hawaiian shirt at a time”. https://21pineapples.com/
Bravo to these young entreprenuers who have created businesses with their passion and talents. Many of these business owners give a portion of their proceeds to help others. Thank you for taking a look at these enterprises that would make great gifts for the holidays. Please feel free to share and follow each on social media.
That’s what is in my noggin this week.
~Teresa 🙂
Follow Nick and navigating DS-ASD on Facebook and Instagram at Down Syndrome with a Slice of Autism
October is Down Syndrome Awareness Month. My son, Nick is 29 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, my mission is to educate others to better understand more about Down syndrome and autism. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome in all aspects of our society.
Down syndrome also called Trisomy 21, is a condition in which a person is born with an extra chromosome.
Here are 7 easy ways that you can promote Down syndrome awareness and acceptance:
1. Post information and stories about individuals with Down syndrome on your social media platforms. You can follow many inspiring individuals on Facebook and Instagram like Nick at #Down Syndrome with a Slice of Autism. Here are a few of my favorites:#noahsdaddotcom #calebs_crew #brittanysbaskets #chrisnikic #dsdn #chucklesandmeatloaf #nothingdownaboutit #sean_from_born_this_way #troymadeit #abigail_the_advocate #theluckyfew #aceismyfriend #ndss #ndsc
2. Use and promote “person first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
3. Check with your local Down syndrome support group to see if they have promotional materials, like books and bookmarks that can be distributed at libraries and schools.
4. Many local Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.
6. Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.
7. Check out my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is helping so many readers understand both Down syndrome and a co-occurring Down syndrome and autism (DS-ASD). It’s available on Amazon. Please utilize the share buttons on social media and order your copy here: @ https://amzn.to/2W3Un6X
Advocates for Down syndrome will tell you that “Down syndrome is just a part of who they are, not a definition of who they are”. The first step is awareness, the second step is acceptance and inclusion. Individuals with Down syndrome and their families want to encourage acceptance without judgement and change perception to see the whole person for who they are. Thank you for supporting and sharing information about Down syndrome awareness this month. Together we can promote understanding, acceptance and inclusion of all individuals with Down syndrome. That’s what is in my noggin this week.
Blog #252~DS-ASD:Teaching Personal Hygiene and Independent Living Skills at Home
The importance of teaching personal hygiene and other independent living skills at home can’t be emphasized enough. Parents, caregivers, teachers and aides are all on the front lines to support individuals with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 29 years old and has DS-ASD, and honestly one of the most challenging areas to teach is personal hygiene. One thing that I have learned over the years is that it is never to early or late to work on these skills. This week we will examine specific skills and strategies to teach your loved one with DS-ASD.
Personal Hygiene and Independent Living Skills at Home:
*Using the toilet
*Putting clothes in the hamper/ hanging up towel
*Picking out clothes to wear/ dressing skills
*Brushing Teeth/ flossing
*Washing hands & face
*Putting on deodorant
*Shaving
*Beauty Regimens
*Menstrual cycle cleanliness
*Bathing/ showering & drying off
*Brushing hair
*Blowing nose
*Clipping nails/ tolerating and desensitizing nail clipping
From the list above, consider the strengths of your child, start with a more preferred activity and build from there. Offer support using visuals or visual modeling with breakdown of the steps. Here are a few examples, many of which you can get from Google Images and YouTube. Consider whether the child responds better to understanding actual photographs, videos or Picture Exchange Communication(PECS) Symbols. Many speech and occupational therapists have visual supports that they can share with you. So, be sure to ask your child’s school or private therapists for these as well.
Washing Hands Routine:
Shaving Photo Visuals on a Key Ring:
Video Modeling of Brushing Teeth:
Over the years, we have used all of these visual supports and modeling techniques to teach these tasks. It can be very beneficial to work with a BCBA behaviorist who can help target skills, breakdown the steps and practice on a consistent basis. The BCBA can also build in schedules and rewards to help support and motivate your child.
Here are some great resources for teaching personal hygiene and boundaries by author Mary Wrobel:
Independent living, hygiene and home management skills help to build confidence, a sense of ownership and belonging. Building these skills sets will give your child more jobs/day program and housing options when they become an adult.
To view more independent living skills click on the two previous blogs:
We hope that you have gained some insight and strategies for building independence from the past three blogs #250-252. Our goal and passion is to make this road of a dual diagnosis easier for other families. We also want to inspire you as a parent, teacher or caregiver to help your child reach their full potential. 🙂
For more information on navigating co-occurring DS-ASD in my book. Click here to order: https://amzn.to/2W3Un6X
Blog #251~DS-ASD: Independent Living Skills at Home
As a parent, teacher and caregiver, how do you help a child reach their full potential and become as independent as possible? I am a parent of a 29 year old son who has a dual diagnosis of Down syndrome and autism (DS-ASD). I work daily with my son Nick, on how to be responsible and do things independently. This gives him a sense of accomplishment and belonging. Last week’s blog focused on how to teach skills and jobs you can introduce in the kitchen. Click here to view: https://wp.me/p2ke99-3aS
This week, I have a full list of jobs for the kitchen, laundry and around the main floor living area.
Home Management Skills:
Cleaning up toys, putting away in bin/basket
Sweeping/ mopping the floor
Vacuuming the floor
Dust furniture
Throwing away items in the trash
Taking out the trash
Empty out recyclables and can crushing
Taking garbage and recycle bins to the curb
Picking up the mail
Wiping off countertops and windows
Set the table
Assist with meal planning, food preparation and making choices of food and snacks
Washing dishes
Loading and unloading the dishwasher
Feed pets
Put dirty clothes in the hamper
Carry and load laundry into washer and dryer
Folding clothes
Put away clothes
Hang up coats
Making the bed
Bring in and put away groceries
Water plants
In last week’s blog I mentioned the that these jobs didn’t happen overnight. We have built on these for many years. I suggest you start small and use lots of praise and rewards. Over the years we have modeled the jobs ourselves, used visuals, and video modeling to teach these tasks. It can be very beneficial to work with a BCBA behaviorist who can help you target skills, by meeting the child where they are at, breaking down the task and using the hand over hand technique as well as point prompts to support the child.
These home management skills will help to build self-esteem, along with a sense of ownership and belonging. Building a skill set of independence will give your child housing options when they become an adult. The next blog will move into the bathroom and include some personal hygiene skills. We hope that you feel inspired as a parent, teacher or caregiver to help your child to reach their full potential.
That’s what is in my noggin this week.
~Teresa 🙂
For more information on navigating co-occurring DS-ASD. Click here to order: https://amzn.to/2W3Un6X
Blog #250~DS-ASD: Teaching Independent Living Skills
The ultimate goal for parents, teachers and caregivers is to help the child reach their full potential and become as independent as possible. I am a parent to a soon to be 29 year old son who has a dual diagnosis of Down syndrome and autism (DS-ASD). I strive and struggle daily to help my son Nick, but also coach and encourage and other families by offering strategies to assist their children. Independent living skills teach kids how to be responsible and give a sense of accomplishment. How do you start teaching these skills? That’s what I want to focus on for this week’s blog and it’s also a goal that I set for myself and Nick this year.
5Tips for teaching independent living skills:
*Meet the child where they are at and build activities around their strengths
*Use visual schedules, task strips, token boards, modeling/video modeling, point prompts and hand over hand techniques
*Start with a preferred activity and include fun tasks
*Focus on one area or task at a time and build from there
*Use a highly preferred reinforcer that is motivating to your child
The first thing to do when starting to teach a skill is to identify an activity or task. Then, you want to meet the child where they are at according to their skill level. It’s helpful to pick something that you can build around the child’s strengths. My son Nick is very good at matching and knowing where things belong. He’s always had a keen eye and we play upon this strength. It helps to focus on one area of the house at a time. Let’s start with the kitchen, what tasks could your child do?
Kitchen Task Ideas:
*Help load or unload the dishwasher/ wash and dry dishes
*Wipe down countertops and windows
*Sweep and mop floor
*Feeding pets
*Help with garbage and recycling/ can crushing
*Set the table
*Assist in meal preparation and making choices of food and snacks
*Sweep and mop floor
*Put away groceries
Using visuals can help the child make choices and understand the steps involved by breaking down the task. Schedules and token boards give the child a clear beginning and end to what is expected and provide predictability. Task strips like the one below help to break down the activity into smaller steps:
Nick’s kitchen tasks includes unloading groceries and the dishwasher and emptying the recycling container to the outdoor bin. When the weather permits, he helps push the garbage and recycling bins to the curb. This is followed by a highly preferred reward= Sprite. Nick also helps with meal prep and wiping the countertops down. He takes great pride in his jobs and this gives him a sense of accomplishment.
These jobs didn’t happen overnight. Over the years we’ve used visuals to teach tasks but also modeling/ video models, using the hand over hand technique and fading back to point prompts. It can be a a lot of frontloaded work getting started and teaching your child. Working with a BCBA behaviorist can be very beneficial in identifying target behaviors and building the skill set to complete living skills independently.
This blog will be the first of many to focus on teaching independent living skills around the house. Nick and I will take you through one room at a time. Our goal and passion is to make this road of a dual diagnosis easier for other families. We also want to inspire you as a parent, teacher or caregiver to help your child reach their full potential.
That’s what is in my noggin this week.
~Teresa 🙂
For more information on navigating co-occurring DS-ASD in my book. Click here to order: https://amzn.to/2W3Un6X
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 🙂
Learn more about navigating co-occurring DS-ASD:
Follow us for more ideas, strategies, photos and videos on social media (Facebook & Instagram) at:
October is Down Syndrome Awareness Month. My son, Nick is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, my mission is to educate others to better understand more about Down syndrome and autism. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome in all aspects of our society.
Here’s how YOU can promote Down syndrome awareness and acceptance:
🙂 Post information and stories about individuals with Down syndrome on your social media platforms. You can follow many inspiring individuals on Facebook and Instagram like Nick at #Down Syndrome with a Slice of Autism. Here are a few of my favorites:#noahsdaddotcom #calebs_crew #brittanysbaskets #chrisnikic #dsdn #chucklesandmeatloaf #nothingdownaboutit #sean_from_born_this_way #troymadeit #abigail_the_advocate #theluckyfew #aceismyfriend #ndss #ndsc
🙂 Use and promote “person first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
🙂 If you are a parent of a child with Down syndrome, send updates, pictures and tell your story to your family doctor and OB/GYN. Consider becoming a Hope Advocate-You will get a custom hope kit to distribute to your OB/GYN and family doctor. More information @ https://hopestory.org/sign-up/
🙂 Check with your local Down syndrome support group to see if they have promotional materials, like books and bookmarks that can be distributed at libraries and schools.
🙂 Many Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.
🙂 Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.
🙂 Here’s how you can help support families like ours, The Down Syndrome-Autism Connection is the gold standard organization supporting DS-ASD families @http://www.ds-asd-connection.org/. I am looking for 21 people to donate just $21 (or more) for the 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. The Connection provides valuable resources and support for families like ours in over 10 countries. Click here to donate: https://givebutter.com/E6h2IX/teresaunnerstall
A Lifeline for a lifetime
🙂 My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is helping so many readers understand both Down syndrome and a co-occurring Down syndrome and autism (DS-ASD). It’s available on Amazon. Please utilize the share buttons on social media and order your copy here: @ https://amzn.to/2W3Un6X
Thank you for supporting and sharing information about Down syndrome awareness this month. Together we can promote understanding, acceptance and inclusion of all individuals with Down syndrome. That’s what is in my noggin this week.
Down Syndrome with a Slice of Autism 