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 

Follow Nick:

Facebook and Pinterest @Down syndrome With a Slice of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

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 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

How many times have you made a new year’s resolution and failed to reach it?

new-year-resolutions-825x549

New Year’s resolutions can be daunting and difficult to keep.  This year, I am changing  my tune.  I’ve adopted a new principle personally and for my son, Nick who is 24 years old, and has a dual diagnosis of Down syndrome and autism.  As a fitness professional for 35 years, my job is to motivate, challenge and inspire my clients.  Being fit and healthy isn’t just about eating right and exercising.  To feel your best, you must take care of the mind, body and spirit collectively.  As a parent of a child with special needs, there are more demands, that can wear on you both physically and emotionally.  It is essential to take care of your physical and mental needs to reduce stress and avoid burning yourself out.

mind body spirit

I was listening to a Sirius XM radio interview with Teddi Mellencamp (yes the daughter of John Mellencamp), who is an accountability coach. She gave a better alternative, instead of making new year’s resolutions.  Teddi suggested that you pick 3 things each day that will take care of you personally, and hold yourself accountable.  Write them down, and try it for just 5 days.  These should be centered around helping you to feel better, both physically and emotionally.  By doing this, you begin to create good habits, that leads to confidence, and ultimately changing your lifestyle.

So, I tried it by writing down 2 things each day (3 seemed too much with my busy schedule).  Here are a few things I did:

*Cleaner eating- Replace Sun Chips with almonds and make a chicken wrap with only avocado and lettuce.

*Relax, stretch and be mindful of breathing to relax and calm the body,

*Bump up home workout weights from 10 to 12 pounds.

*Be mindful of the gratitude you receive throughout the day

*Eat an extra piece of fruit.

*Turn off the TV and listen to music I enjoy.

*Be compassionate, smile at a stranger and do random acts of kindness.

*Drink one less cup of coffee and replace with more water.

*Go upstairs, every time I needed something, instead of waiting until things have accumulated.  (This increased my steps significantly).

*Apply one of the principles of Feng Shui.  De-clutter home and clean 8+ years of dust off the high cabinets to increase the flow of chi energy.

*Pray more throughout the day.

*Shop on the outer edges of the grocery store as much as possible. (This is where the nutrient dense, clean and less processed foods are located).

*Respond, and don’t react with anger.

*Meditate for 10 minutes.

I have to say, there is a feeling of personal accomplishment when you hold yourself accountable, and do just 2 things a day to promote personal health both physically and emotionally.

relax

As a fitness professional, here’s what I suggest on how to start a new fitness program.  Don’t set yourself up for failure. Replace the resolution of going to go to the gym 5 days a week with a more reasonable goal. Change the mindset to, doing some physical activity 3-5 days a week.  If you can’t make it to the gym, or you are too tired, then get out and walk or do some calisthenics for just 10 minutes.  Add an extra minute to each workout.  It will all add up, and you will build confidence and feel less guilty.  Break it down to smaller pieces and you will set yourself up for success! 🙂

This got me thinking that maybe I should apply this principle with my son, Nick who has Down syndrome and autism.  Being a parent, we often feel like we are not doing enough to help our child learn and develop skills.  Blame it on housework, our jobs, time schedules/demands, and just plain exhaustion which leads to feelings of guilt.  So, I am going to just focus on one thing that will help my son be more independent each day.

I started yesterday, by encouraging Nick to use his AAC (Augmentative and Alternative Communication) device.  Nick successfully used it to request breakfast and lunch, along with a few other highly preferred rewards he enjoys.

Today, I will continue to focus on Nick using his AAC device by requesting foods and after dinner getting him to ask to take a shower.  These are little steps, but they can add up and enable my son to realize the power of using his voice, via his talker.  I have to constantly remind myself to be disciplined with not only myself, but with my son.  Ultimately, our goal as parents is to guide our children to be as independent as possible and in the process, help them gain more confidence as individuals.

Saying goodbye to New Year’s resolutions, that are often impossible to keep for 365 days, feels liberating.  Shifting the mindset to smaller goals is more realistic.  Little changes add up to building healthy habits.  It will help you feel better physically and emotionally each day.  Plus, it’s attainable and a more reasonable approach to making positive changes.  Breaking things down into smaller pieces is a better way to have success, and build confidence gradually and consistently.  It also allows you to let go of the feelings of guilt that you aren’t doing enough for yourself and your family. I would love to hear your ideas 2-3 things you might add to improve your mind, body and spirit each day!

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan), Parenting Special Needs

Blog #204~ Lessons Learned from the Last Lecture

Blog #204~Lessons Learned from the Last Lecture

Randy Pausch was a professor at Carnegie Mellon and author of the national bestselling book, The Last Lecture.  He encouraged his students to attempt hard things and not worry about failing.  He would give out “The First Penguin Award” to the team who took the biggest gamble trying new ideas and technology, but failed to achieve their goals.  “This award celebrated out-of-the-box thinking and using imagination in a daring way.”  The title of this award came from the way that penguins jump into the water that might contain predators.  Somebody has to be the gustsy, first penguin, and take a bold leap into the unknown.

fail spectacularly

The takeaway is this, it’s important to attempt hard things and  you can expect to hit brick walls.  That is when you gain experience.

“Experience is what you get when you didn’t get what you wanted.”

This quote struck me as I was reading The Last Lecture over the weekend.  My son Nick, was born and diagnosed with Down syndrome.  Years later, he recieved a secondary diagnsosis of autism.  I didn’t get the “normal child” that I expected.  My path raising Nick has been very different then I had planned.  But along the way, over the past twenty-four years I’ve gained a great amount of experience in navigating my son’s journey.

Randy Pausch, a computer science professor gave his last lecture after receiving a diagnosis of terminal cancer, leaving behind a wife and three young children.  His book, The Last Lecture, co-written with Jeffrey Zaslow is a summation of everything Randy believed with some valuable lessons in “overcoming obstacles, enabling others, and seizing every moment.

There are so many lessons offered by Pausch in The Last Lecture.  I want to share a few that resonated with me, as a parent of a child with special needs.  When my son, Nick was born twenty-four years ago, I made some choices on how I was going to manage life.  I was dealt a set of cards, that I didn’t expect.  But soon realized, that I would have to play the hand differently.  This meant getting support to help my son reach developmental milestones and creating a home environment that supported his growth.  I also learned to reach out to parents, therapists and teachers with experience to help me understand how to help my son become the best he could be.

Randy Pausch cards dealt with

Another valuable lesson is in the approach to life when facing adversity.  Randy says, “Make a decision, are you going to be a Tigger or an Eeyore?”  A.A. Milne’s beloved Winnie-the Pooh characters are in two different camps.  I’d choose fun-loving Tigger over grumpy Eeyore every time.  Optimism can take you much further in life!

Randy-Pausch-Pooh-Quote

Here are a few more nuggets of wisdom from Randy Pausch, and how they relate to being a parent of a child, with special needs.  I found these lessons to ring true, especially navigating a dual diagnosis of Down syndrome and autism:

“All you have is what you bring with you.”

I understand all too well the need to be prepared for whatever situation the day may bring with my son.  What do I need to bring and what should I anticipate?  This could be anything from an extra set of clothes, spare iPod, PECS book, AAC device, snacks, Kleenex, stim toys and more.  Identify possible trouble spots/ triggers for meltdowns/messess and come up with ways to avoid these incidences.  Also, have a contingency plan in case as Randy says, “All hell breaks loose”.”

“All you have to do is ask.”

Randy tells a story about his Dad wanting to ride in the nose cone with the driver on the monorail at Disney World.  His Dad assumed they didn’t let regular people ride up there.  Randy told his Dad he had a trick and asked if his Dad wanted to see it.  He walked up the driver and asked, and the driver said yes.  You never know unless you ask, and this is true from my experiences working with doctors, therapists, teachers and other IEP members.  Ask for IEP drafts before the meeting, and to be included in your child’s goal planning.  Ask that the parent concerns (that you’ve written ahead of time), be put directly in the IEP at the beginning of the meeting.  These concerns will be a part of what drives the IEP.  Ask the doctor for whatever your child might need for their health like, prescriptions for therapy, nutritional supplements, evaluations for orthotics and to get all test results as soon as they come in.

“Start by sitting together”

This is essential when going to your child’s IEP (Individual Eduction Plan) meetings.  Randy’s approach to working with a group of people is simple.  Lay all the cards face up on the table and say to the group, “Ok, what can we collectively make of this hand?”  He offers a few tips for a successful group meeting like having optimal meeting conditions (make sure no one is hungry, cold or tired).  I’ll add in cramped rooms with  small chairs, as this has happened to me in past IEP meetings. Randy also adds, to let everyone talk, check your egos at the door and praise each other.  Finally phrase alternatives as questions, so instead of saying, “I think we should do A and not B” try saying,  “What if we did A and not B”.  This allows the team members to offer comments rather than defend their choice.  It opens up the discussion to get input from the whole IEP team.

The lessons that Randy Pausch shares in his book, are valuable.  Here are my takeaways as they relate being a parent of a child with special needs:

*Don’t be afraid to think outside the box and try something daring.

*If you hit a brick wall, learn from it and gain more experience.

*You can’t change the cards that were dealt, but you can change how you play the hand.

*Your approach in playing that hand can be with a positive or negative attitude, it’s your choice.

*All you have to do is ask.  They might say sure, why not.

*Start by sitting together, when it comes to IEP’s the team should come together to be solution oriented, not problem oriented in collaboration approach.

Thank you Randy Pausch for the valuable lessons you shared in The Last Lecture and for the reminder to take what you have learned so that you can help others who might be starting down the same path.

And as you navigate your path always remember this…..

Randy Pausch spending time

  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsatuism

Twitter @tjunnerstall

 

 

Posted in Autism Spectrum Disorder (ASD), Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #184~ Addressing Problem Behaviors in Individuals with DS/ASD

Blog #184~Addressing Problem Behaviors in Individuals with DS/ASD

Problem behaviors in individuals with Down syndrome and autism (DS/ASD), are very common.  Speech deficits, make it difficult to communicate wants and needs.  Often individuals with DS/ASD, may exhibit problem behaviors to communicate something.  Last week I participated in a webinar about addressing such behaviors, led by Sam Towers (http://sam@towersbehavior.com), that was hosted by The Down Syndrome Association of Minnesota.  Here is a summary of this webinar on addressing problem behaviors in individuals with DS/ASD.

First of all, it is important to build rapport.   Establish a friendship with kindness, and positive activities that the individual enjoys.  This will provide the basis for teaching the person, that there are other ways, besides problem behavior, for achieving goals.  Sam suggested a 10:1 ratio of praising good behaviors.  Praise encourages the individual to do it again.

Why do people use problem behaviors?

1.Get attention

2.Get something

3.Escape or avoid something unpleasant

4.Get a pleasant sensation

All behaviors allow a person to achieve a goal, because the payoff is reinforcement.  You get what you pay more attention to.  The idea is to avoid letting problem behaviors have a payoff.  So, focus ALOT more on addressing the good behaviors.  This can be done by building skills, through teaching replacement behaviors.  If a child is throwing things to get attention, the replacement behavior could be to teach them to tap you on the shoulder or use their communication device.

My son Nick is 23 years old and has a dual diagnosis of DS/ASD.  He has many behaviors that are used to get attention or something, and provide a pleasant sensation.  Part of the autism piece is sensory related.  Flushing the toilet repeatedly, pushing the microwave fan or phone intercom buttons are ways that he stims, which is a form of self-entertainment.  One suggestion, for this would be to teach other ways for him to entertain himself.  Some supports that I recommend, are to use social stories, redirect to an AAC (Aumentative Alternative Communication) device, PECS (Picture Exchange Communication) book, or create a choice board.

Choice Boards:

choice boards

If an individual is trying to get out of an activity, they may exhibit behaviors like self-injury, yelling, or stop-drop and plop.  In these cases, it’s important to provide supports like, a first-then charts, “take a break” card, noise cancelling headphones, a visual schedule, or a timed timer.

timer app    first then  1,2,3,4 Sprite

Bottom line, you can’t let the problem behavior become the payoff.  The single most effective way to get rid of a problem behavior, is to arrange things so that there is no payoff (reinforcement) for the behavior. Completely withholding reinforcement can be difficult, and often leads to an increase in the behavior.  This is called an extinction boost.  But if you stick to your guns, this will result in the behavior decreasing.  The key is to be consistent in not rewarding the undesirable behavior.  If it is reinforced intermittently, it will cause the behavior to be more long-lasting, because there is still some payoff for the individual.

Understanding the reasons people use problem behaviors, building skills and supports to teach replacement behaviors, praising 10:1 good behaviors, and arranging things so that there is no payoff for the problem behavior are all great tools for addressing problem behaviors in individuals with DS/ASD.  Here are a few resources which may also help:

Edward Carr Book    Social Story Book  visual strategies book

When Down Syndrome and Autism Intersect,
edited by Margaret Froehlke and Robin Zaborek:  

down syndrome and autism intersect

A special thank you to the Down Syndrome Association of Minnesota and Sam Towers of Towers Behavior Services for an informative webinar.  Now, it’s time to make a new choice board for Nick.  Have a great week, everyone.

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

~Teresa

Follow Nick:

Down Syndrome With A Slice Of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter