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.
As Autism Acceptance Month winds down, I want to highlight a great new resource for families, medical professionals, clinicians, teachers and caregivers who are supporting an individual with a dual diagnosis of Down syndrome and autism. Did you know that research shows that about 16-18% of people with Down syndrome also have autism spectrum disorder (DS-ASD) (Autism Speaks: Richards et al., 2015). Navigating the DS-ASD journey is complex and challenging, I’ve been on this road with my son Nick, for 30 years. Thankfully, the top experts in the field have joined together to create this new resource that was just published: The second edition of When Down Syndrome and Autism Interesect: A Guide to DS-ASD for Parents and Professionals, by authors Margaret Froehlke, RN, BSN and Robin Sattell, MS.
“The first edition of When Down Syndrome and Autism Intersect was the first book to focus on the unique profile of a Down Syndrome-Autism Spectrum Disorder (DS-ASD) diagnosis. Now with this greatly expanded, updated second edition, it remains the only book for parents and professionals offering a comprehensive guide to supporting individuals with this complex dual diagnosis. Written by a large team of veteran parents and experts in the field, it covers every aspect of caring for children and adults with DS-ASD. Full of good will and respect for the DS-ASD community, this book offers sound information and resources steeped in research and clinical findings. It is also grounded in respect and concern for the parents’ need for specialized supports. Families will find a treasure trove of anecdotes and practical advice, discovering that they are not alone as they continue on their DS-ASD journey.“
This new book is a game changer for the DS-ASD community. It compiles the most up-to-date, evidenced based research, best practices and strategies to support individuals with DS-ASD. I had the honor of being a contributor in chapter 10, “Understanding Communication, Behavior and Sensory Strategies”. When Down Syndrome and Autism Intersect is the essential guide to help understand, navigate and empathize this complex and often difficult journey. I look forward to sharing more about the contents of this book with you in future blogs.
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 #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
This week I have 10 back to school tips and strategies specifically geared to individuals with a dual diagnosis of Down syndrome and autism (DS-ASD) and their families. My name is Teresa Unnerstall, I am a DS-ASD parent, consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. My son Nick is 28 years old and my passion is to help families, educators, therapists, medical professionals and anyone interested in supporting individuals with co-occurring DS-ASD.
1. Prepare the student with a visual countdown calendar, and re-instate morning/evening routines.
2. Tour the school with your child. Then, create a social story or video social story of the school settings and staff that the student will be interacting with. Review this story regularly for the first few weeks of school.
3. At the tour, ask the teacher to show you the safety & hygiene precautions, accommodations and equipment that is listed in the IEP to make sure everything is in place.
First Then Visual AccommodationTeaching feelings visual accommodationNick using the Smart Board
4. Prepare a student “About Me” profile sheet. There are many templates available online that you can Google or try Canva for free. You can include different sections such as, Things I love, My Strengths, What Works Best for Me, How to best support me, What I struggle with and Interests. Make several copies to share with the staff.
5. Determine the modes of communication back and forth with the teacher and school staff. Examples include texting, email, communication logs/notebooks and daily report sheets. This is very important as many students with DS-ASD who have language deficits or may be non-verbal and unable to share how their day went.
Daily Report Sheet
6. Review the child’s IEP to insure that all goals and accommodations are still relevant and meaningful. Note any additional needs or concerns you have coming off of the summer break and share these with the staff.
7. If the student has a behavior support plan (BSP), check to see if this has been shared with all staff and is ready to put in place on day one. Make a list of any new target behaviors that need to be addressed and added into the BSP.
8. If the student uses AAC (Augmentative and Alternative Communication) make sure the teacher and aides are familiar with how to use the program, whether it’s high tech or low tech like a picture exchange system (PECS). You can request a training for staff and parents on how to program devices, navigate tabs and get trained on how to utilize PECS with the school speech and language therapist or school district AAC specialists.
AAC Touch Chat Program
9. Students may have lost skills or experienced regression over the summer break. Evidenced-based practices help students regain lost skills and develop new ones. Some examples are using visuals, schedules, task strips, task analysis, first-then prompts, visual timers, choice boards and sensory breaks.
Sensory Break PECS Icon, Is there a sensory break area at your child’s school?Time Timer AppCountdown Timer AppChoice BoardsWork Station Accommodation
10. Show your commitment by staying on top of your child’s progress. Ask for data at each quarter. Data drives decision making for future conferences and IEP meetings. If possible, volunteer at school, (room parent, field trip chaperone, art awareness presenter, book fairs, picture day and assisting with making learning materials like laminating and making copies).
Being prepared and invested in your child’s needs will help them reach their full potential for the new school year. That’s what is in my noggin this week.
~Teresa
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Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy
IEP Season is here, do you need help understanding the process and how to become a better advocate for your child? I’ve got the resource for you, just in time for IEP season. It is the new go-to guide, Special Education Savvy: A Mom’s Guide to Mindset and Effective Advocacy Throughout the IEP Journey and it’s a must read! I received an advanced reader copy of Mary Beth Gilliland, M.ED book which was just released last week. The author literally takes you the reader, by the hand and guides you step by step on the IEP process.
IEP stands for Individual Education Plan, which is a written document outlining the program of special education instruction, supports and services that a student with a disability needs to make progress in school. IEP’s can be complicated and daunting, especially for moms who are new to navigating this journey with their child. I was one of those moms, my son Nick, has co-occurring Down syndrome and autism (DS-ASD). This new book, Special Education Savvyis the book that I wish I had in my hands 27 years ago.
Special Education Savvy stands out in my mind as different than other special education/ IEP/advocacy books for several reasons. First of all, the author Mary Beth Gilliland feels like a mentor that is sitting right there with you at an IEP meeting. She provides sections that include basic special education 101, advocacy strategies, IEP meeting tips and more. You will also learn how to handle the uncomfortable and often challenging encounters that parents may face when IEP’s, when aren’t being followed or their child is not making progress. Second, this book is easy to read especially for busy moms who are juggling a multitude of responsibilities. The technical jargon associated with special education is clearly spelled out making it easier to understand. Mary Beth also breaks down every aspect of the IEP process, so you don’t feel overwhelmed. Finally, as the title suggests you come out of each chapter feeling confident with a savvy mindset ready to advocate for your child.
I found myself shaking my head, yes as I read each chapter. Mary Beth uses clever analogies to make important points about a student’s rights along the technical stuff like IDEA (Individuals with Disabilities Education Act) and FAPE (Free and appropriate public education). Again, she clearly explains these tough areas and makes the information parent friendly.
As a DS-ASD consultant, advocate and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (available at https://amzn.to/2W3Un6X ) I highly recommend Special Education Savvy. It is the ultimate instruction manual for understanding and advocating for your child’s IEP. You will feel more educated and empowered with this well written toolbox of strategies. Ultimately, this knowledge will help to ensure your child receives the services and support to be successful in school.
That’s what is in my noggin this week. Now, I am off to find a cute pair of yellow flats and get savvy for April to advocate about Autism Awareness Month.
~Teresa 🙂
Follow us on social media on Facebook and Instagram @ Down Syndrome with a Slice of Autism and on Twitter @tjunnerstall.
I am Teresa Unnerstall, a DS-ASD consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X) My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).
Here are my top 10 Autism Holiday Stress Tips to help you navigate the upcoming holiday season. Click the link below to view:
I hope you have a safe and joyous holiday. Remember to give yourself a little extra grace as we deal with the added stress caused by the Covid-19 pandemic. I have pared things down even more this year and striving for simplicity. That’s what is in my noggin this week.
Cheers and Be Well,
Teresa 🙂
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Blog #232~Special Needs Parent and Educator Help During Covid-19
As a dual diagnosis DS-ASD writer and consultant, I’m scratching my head on how to help special needs families faced with the daunting task of implementing remote distance learning. This is an unprecedented time we are in facing with Covid-19. It’s like a continuous Ground Hog Day with no end in sight. My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He normally attends an adult developmental training program. His program has been closed since March. The focus at home has been to work on independent living skills. So what advice can I offer? What would I do if my son was still in school?
My short answer is this………
“As an IEP team you have to collaborate together and think outside the box on how to navigate distance learning. That means asking for support, visuals, making addendums to the IEP, finding outside resources and therapies. Always lead with the child’s interests and strengths when implementing lessons and goals both at school and home.”
I am going to stay in my lane and introduce you to one of the top experts in navigating IEP’s. Catherine Whitcher’s podcast is packed with great advice on how parents and educators can work together to make education successful during the Covid-19 crisis. You won’t be disappointed and you will learn ALOT!!! 🙂 Click here to listen:
In this podcast, Catherine Whitcher explains that you can’t do an IEP meant to be implemented at school in the home. Here are a few key bullet points of her podcast:
*Keep track of what is being tried, what is working and not working.
*Collaborate together to come up with solutions, make adjustments and addendums to the IEP.
*Redefine what is appropriate for this current situation, then come up with a new plan.
You can follow Catherine on Facebook and Instagram where you will learn so much as I have over the years at https://www.catherinewhitcher.com/ She offers up to date, practical information in her blogs, podcasts and live feeds on social media.
Don’t wait for your child to get back into school to make up for lost time. Take action now to make the best out of distance learning by thinking outside the box, collaborating with the IEP team and working with your child’s strengths and interests. That’s what is in my noggin this week.
~Teresa 🙂
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Blog #230~ Book Review: Scoot Over and Make Some Room
My recent summer read– Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs,by author and Instagram star, Heather Avis is a must read. She is the mother of 3 adopted children, two with Down’s syndrome and one of color. Here is one review from her book that speaks volumes:
“In a world of divisions and margins, those who act, look, and grow a little differently are all too often shoved aside. Scoot Over and Make Some Room is part inspiring narrative and part encouraging challenge for us all to listen and learn from those we’re prone to ignore.”
Each chapter in the book Scoot Over and Make Some Room extends the challenge to make room for not only individuals with Down syndrome but way beyond to all individuals with different abilities, ethnicities, race, viewpoints and perspectives. Heather’s book is filled with humorous stories, challenges and lessons she has learned raising her 3 children, navigating IEP’s, inclusion and acceptance. But this book dives down much further, by challenging the reader to look into their own lives and broaden your understanding and compassion towards people who may be different from you.
My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism@ https://amzn.to/2W3Un6X there are many stories about times where I would brace myself in public. Countless times I would apologize for my son’s seemingly inappropriate behavior, and yes like Heather have a moment where the pants have gone down, 🙂
Heather tells about the “pants down in the park” episode that was highly inappropriate (and a one-time occurrence) with her daughter Macyn. I can attest to the need to be on high alert and cringing at times. Macyn is a very spirited and outgoing girl who likes to engage with strangers by waving and sometimes asking “WHATCHA NAME?” This happened once at a hip LA restaurant. This raises a good question: Is this behavior inappropriate or just different than the social norm? Why are we so fearful to interact with individuals who have an intellectual or developmental disability? Often it is fear of the unknown and being uncomfortable around someone who may speak or act differently.
Heather writes this powerful message in her book:
“We fear the unknown. And unfortunately, until we create space for people with physical and intellectual disabilities to show up exactly as they are and give them permission to interrupt our social norms, they will continue to be unknown and we will continue to be fearful,”–Heather Avis
What a profound message this is to society and lesson about acceptance. Personally, I feel that the world could use more kind interactions like saying “hi” and “WHATCHA NAME.” Obviously, we can all agree that “pants down in the park” is an inappropriate behavior. But as Heather writes in part:
“all of us have a responsibility to shift the way we react when faced with uncomfortable social situations. All of need to scoot over and make some room for people to respond in a way we’re not use to.”–Heather Avis
One of my favorite parts of this book is the chapter entitled “Make room for the Wildflowers.” Much of what we do in life is like a garden– planted in nice, neat rows. Take for instance inside school classrooms where the desks are all lined and in sync. Is there any space for the wildflowers to grow in these tidy rows? This metaphor opens up the dialog about inclusion and different abilities working alongside in the same classroom. Can we scoot over and make some room to let the wildflowers grow amongst the seamless rows and see the value of inclusion and all abilities? I can speak from experience that my son, Nick brought great value and taught lessons of patience, compassion and unconditional love to his peers while in the inclusion classroom setting. He continues to do so as a young adult with his interactions out in the community and at his adult developmental day training program.
There is so much more to this book and you will have to read it to find out for yourself. Scoot Over and Make Some Room is a call to action to shout the worth of people who are left out and misunderstood. Every parent, extended family member, physician, educator, pastor and others will gain a deeper understanding of how to do a better job to adjust, sit and listen in order to learn how to find a way to make room for everyone to be valued, accepted and included in our society.
That’s what is in my noggin this week.
~Teresa 🙂
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Heather Avis writes from the heart about all the things she wishes the every day person knew about inclusion. This book applies to teachers, parents, siblings and simply everyone who wants to change the way we see inclusion in the world around us.
Down Syndrome with a Slice of Autism 