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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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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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD Winter Update

DS-ASD Winter Update

Vail view 2019

My son Nick is a young adult, who has a dual diagnosis of Down syndrome and autism (DS-ASD). He attends an adult developmental day training program which provides a variety of structured activities. This week, I want to catch everyone up on what Nick’s been doing this winter.

Nick’s day program includes learning and enrichment activities. Clients enjoy learning new skills, vocational jobs, exercise, crafts, shopping, cooking, theme days/parties and community outings. The structured program is a necessity for individuals like Nick who have a secondary diagnosis of autism. He looks forward to going to this program daily.

Nick at his adult developmental day training program:

Nick bowling fall 2019     nick connect game

There have been many celebrations and fun excursions this winter for Nick. Here are a few of the highlights:

Christmas in Chicago was unseasonably warm this year, no jacket or shoes required. 🙂

Nick Christmas presents 2019     Nick Christmas outside 2019

We recently enjoyed a nice vacation in Vail. Nick loved the dog sledding with Mountain Mushers. He got to ride with his guide and friend, Cameron for the third year in a row. This year Nick road up the gondola for the first time and we did snow tubing. It’s always nice to go into Vail village, and this year his respite worker joined us in the fun and helped support Nick for a few days of our trip.

Vail vacation highlights:

Nick and Cameron Dog Sledding 2019   Dog Sledding 2019 Nick and Miss R Vail 2019   Nick and Dad Tubing 2019

Nick just celebrated his 26th birthday! He had a pizza party with cupcakes at his day program. We also had cake at home and a nice birthday lunch with family.

Nick’s birthday highlights:

Nick birthday at Keeler 2020   nick 26 birthday

nick birthday 2   Nick HBD

It’s been a fun and busy winter in Nick’s world. As most of you know, I have completed my memoir, “A New Course: A Mother’s Journey Navigating Down Syndrome and Autism”  which is forthcoming on May 5, 2020!  My next post will showcase the book and include pre-order details and how you can get your hands on a copy. I can’t wait to share this with all of you. I truly appreciate your support in my writing and following Nick’s world. 🙂

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick’s world to view more photos and videos on social media:

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

Ditch the New Year’s Resolutions:Here’s a Better Idea!

Ditch the New Year’s Resolutions: Here’s a Better Idea!

2020 plan

Happy New Year! It’s time to clear the decks and start fresh.🙂 How many times have you made a new year’s resolution and failed to keep it? As a 35+year fitness professional and mother of a son with special needs (DS-ASD), here is my advice: Ditch the old school resolutions and try a different approach!

Here’s what I’ve got for you to get started:

*Great self-care tips and easy ways to build in healthy habits.

*Quick, easy and  practical ways to get back into fitness.

*Simple approaches to help your child with special needs to gain independent living skills.

Click on this link to read how to make a new plan for 2020: https://nickspecialneeds.com/tag/ditch-the-new-years-resolutions/

Let’s do this, 2020 is going to be a great year! That’s what is in my noggin this week.

~Teresa 🙂

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

Blog #231~Special Needs Tips for Making Accommodations in the Classroom

Blog #231 Special Needs Tips for Making Accommodations in the Classroom

Last week, I focused on 5 back to school tips for special needs parents. For today’s post I want to put a lens on what accommodations look like and their importance in the classroom setting for a student with special needs.

Accommodations are changes that remove barriers and provide a student with equal access to learning. As a parent, it is essential to make sure that agreed upon accommodations and supports are written into your child’s IEP, and in place before the first day of school.

My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he had many accommodations to support his learning and navigation in the school environment. Nick didn’t walk until age 3 1/2 years old due to low muscle tone (a trait of having Down syndrome). In pre-school, the IEP team made an accommodation to transport Nick from point A to B in the building, and in/out of the car line.  Accommodations can come in many forms to support intellectual and developmental disabilities.

visual support ring

Here are some examples of accommodations that can be used in the classroom:

*Communication Notebook and daily reports sent back and forth from school to home

*Classroom Schedule,  Individual Visual Schedules and Social Stories

Nick fist bump AID                   social story working desk

*Alternative Media Tools- Flash cards, board games, computer programs, learning apps/games, AAC (augmentative and alternative communication) and assistive technology devices, PECS (picture exchange communication), sign language, etc.

nick aac

*Sensory Tools help with self-regulation- Figits, stress balls, pencil toppers, tangle puzzles, weighted vests or lap pads, nubby sit cushions, stability balls, etc.

alternative seating

*Motor Breaks and Sensory/Quiet Corners– Build breaks into a student’s schedule. Some can be motor breaks or a sensory/quiet break depending on the need. Equip with items such as rocking or bean bag chairs, mini-trampolines, swings, weighted blankets, noise cancelling earphones, need a break icon etc.

*Visual aids, worksheets and paraprofessionals/aides to assist to accompany lesson objectives and test taking.

*Transition tools- Early hall passing before the bell rings, transition objects, visual schedules, visual timers, etc.

transition timer

*Choice boards to encourage decision making and independent learning skills.

*Work and Reward Charts:

working for chart   first then work

Building in accommodations and supports into your student’s IEP and classroom setting help enhance learning in a positive school environment. Often, individuals with autism and a dual diagnosis of DS-ASD, like my son, thrive with the use of visual prompts to navigate their days more smoothly. The right accommodations make it possible to have a successful learning environment that is less stressful.

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

~Teresa 

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

DS-ASD~What To Do When It’s More Than Just Down Syndrome

DS-ASD~ What To Do When It’s More Than Just Down Syndrome

If you are a parent, teacher, caregiver of extended family member of an individual who has Down syndrome, you are aware of how challenging it is to hit those developmental milestones. There are even more speech deficits, sensory integration problems and challenging behaviors associated with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 25 years old and has DS-ASD. Years ago we suspected that his behaviors and speech delays were perhaps more than just Down syndrome. We got a clinical, medical evaluation to determine that he also had autism. Getting the secondary diagnosis enabled us to receive additional services and support.

DS-ASD Ribbon

Additional Services and Support for DS-ASD:

Speech and Augmentative Alternative Communication

Behavior Support Plan (BSP) and Applied Behavior Analysis (ABA)

Specialized Training for Toileting

Federal and State Funding for Respite Care and Equipment

Support Groups for DS-ASD families online and on Facebook

Besides the additional services and support, we got validation that our son’s challenging behaviors and speech deficits were more than just Down syndrome. This gave us a peace of mind as a family, that we were no longer alone on this new path.

To read more about additional services, support and links related to a dual diagnosis of Down syndrome and autism (DS-ASD) click here:

https://nickspecialneeds.com/2016/09/12/blog-155more-than-just-down-syndrome/

Getting the secondary diagnosis of autism opened up new avenues for our son to get help with communication and tackle the unique behaviors that hindered his progress both at home and school. This made a huge difference in all aspects of his life and ours. It’s a very different path than just Down syndrome, but with support your child and family can navigate it more smoothly.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

DS-ASD Behavior Management

DS-ASD Behavior Management

smile emoji thumbs up

Behavior problems are common for individuals with a dual diagnosis of Down syndrome and autism (DS-ASD). Speech deficits may cause a child to exhibit unwanted behaviors to express emotions of frustration and not being heard. I’ve experienced many behaviors with my son Nick, who is 25 years old and has a dual diagnosis of DS-ASD. While Nick continues to challenge me with undesirable behaviors, I have learned a lot about how to better manage them. This week, here are 5 steps you can take to discover the causes of a problem behavior and prevent it from occurring.

Click here to learn how you can better manage behaviors associated with individuals having a dual diagnosis of DS-ASD:

https://nickspecialneeds.com/2018/08/06/blog-212ds-asd-behavior-management/

Challenging behaviors like throwing, dropping and breaking items are tough to deal with, but once you determine what function this behavior serves, you can put a plan in place to curtail it. A good BCBA certified behavior specialist can guide you through the process by doing a Functional Behavior Analysis (FBA) and creating a positive Behavior Support Plan (BSP). Getting on top of these behaviors will create a calmer and less frustrating living environment for the whole family.

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD~ Summer Vacation Highlights

DS-ASD~ Summer Vacation Highlights

OBX flags 2019

We are back after a two week vacation from Virginia and the Outer Banks, NC. It was so relaxing to be off the grid and enjoy time with family. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a family, we have always made a commitment to travel with our son. It can be challenging for a child with special needs to navigate airports, hotels and unfamiliar venues. But there are things you can put in place to make vacations go smoother…..

In my last blog entry you can access my top 7 vacation travel tips for families: https://nickspecialneeds.com/2019/06/17/ds-asd7-vacation-tips-for-special-needs-families/ 

Here are some of the highlights from our summer vacation in Virginia and the Outer Banks (OBX):

In Virginia, we enjoyed the wonderful hospitality of Nick’s Aunt Ali and Uncle Ron with beautiful views, kayaking on the James River, great food and relaxing in the peaceful country…..

 

Highlights from the Outer Banks, in Duck, OBX:

At OBX we enjoyed beach and pool time, great company, delicious meals and a nice birthday celebration dinner on the sound side of OBX. Nick did well tolerating the sandy beaches this year, and spent more time than ever with us as a family!  We put Nick in tennis shoes to make his way out on the hot sand, with a texture that tends to bother him from a sensory standpoint. He did well hanging out both under the umbrella and out at the water’s edge……….

Nick and Dad OBX beach 2019   Nick and Anna OBX 2019

Dinner on the sound side of OBX at Aqua Restaurant and Spa, including Nick with his Dad & Mom, Uncle Ron & Aunt Ali, Cousins Anna & Sam and Nick’s brother and girlfriend Hank & Kristin…..

Aqua Restaurant and Spa features excellent food, wine, spa treatments and sunsets. Thank you both- to my son Hank for treating me to a pedicure overlooking the sound, and to Ali for the relaxing (and much needed) Swedish massage. As a mother of a child with special needs, it’s crucial to take time for some TLC and pamper yourself. Moving forward, I’m going to make it a priority to do this more than once a year on my birthday. It is good for the soul! 🙂

Sunrise at Duck, OBX….

OBX sunrise 2019

We are very grateful and blessed to have the opportunity to spend vacation each summer with Ali and Ron hosting in Virginia and OBX. Anna, thank you for cooking and introducing us to some wonderful & tasty vegan dishes. The familiar venues help Nick feel secure in his surroundings. This predictability helps him to be less anxious on vacations and makes for a more relaxing experience for all of us.

That’s what is in my noggin this week.

~Teresa 🙂

To see more pictures of the trip and Nick click below to follow on social media:

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Posted in Autism, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

DS-ASD~7 Vacation Tips for Special Needs Families

DS-ASD~7 Vacation Tips for Special Needs Families

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). We’ve had our share of family vacations traveling across the country and overseas.  It’s not always easy and breezy, but with some planning and preparation, your vacation can be less stressful and fun for everyone.

7 Vacation Tips for Special Needs Families:

1. Prepare social stories and visual schedules including the mode of travel, and what is expected from your child. Review the vacation destination venue online with your child. This will give them an idea of where they will be going, and what they will be doing. Print pictures of the vacation venue to create a daily activity schedule. Visuals will provide a blueprint for your child to understand what will be happening, this will lessen their anxiety.

2. When booking accommodations, look for a comfortable and quiet retreat for your family. This may mean a separate living area from the rest of your family or friends in some cases.

3. Bring medications, snacks, comfort items and highly preferred toys/sensory objects in your carry on bag. In addition, it’s wise to pack an extra set of clothes for your child.

4. Plan short, flexible and open-ended adventures on your vacation. Build in time for breaks as needed.

5. Work in at least a few activities that your child will love.

6. Eating familiar foods will help your child feel more at home in a strange place. Check restaurant menus online beforehand, especially in the case of any food allergies or dietary restrictions. Don’t underestimate the importance of this. Once on vacation, we forgot to buy Ranch dressing, this lead to my son having a meltdown.

7. Don’t beat yourself up if things don’t go as planned. As much as you can, try to watch for the triggers that may cause your child to have a meltdown. See what you can do to cut these off at the pass before things escalate.

Vacations while fun, can be challenging for a child with special needs. Prepare in advance with comfort items, visuals, and look for possible triggers that may cause anxiety and discomfort for your child. Build in as much predictability as possible. Keep a relaxed and flexible attitude when approaching daily activities. It’s okay to cut things short, if it gets to be too much. Being prepared, planning ahead and staying flexible will help families have a smooth and enjoyable vacation this summer.

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

~Teresa

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