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

Blog #247~DS-ASD Back to School Tips

Blog #247~DS-ASD Back to School Tips

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.

Order your copy on Amazon at https://amzn.to/2W3Un6X

10 Back to School Tips for DS-ASD Families:

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 Accommodation
Teaching feelings visual accommodation
Nick 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 IconIs there a sensory break area at your child’s school?
Time Timer App
Countdown Timer App
Choice Boards
Work 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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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #239~ Back to School Tips for DS-ASD Families in 2021

Blog #239~Back to School Tips for DS-ASD Families in 2021

As the 2021-2022 School year approaches after a lengthy Covid-19 lockdown, many families feel anxiety about returning to school. Families who have a child with a dual diagnosis of Down syndrome and autism (DS-ASD) have additional challenges and needs to consider.

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 27 years old and my passion is to help families, educators, therapists, medical professionals and anyone interested in supporting individuals with co-occurring DS-ASD.

Order your copy on Amazon at https://amzn.to/2W3Un6X

This week, I want to offer some practical tips to help families ease back to school. Whether you are in person or remote, the goal should be a smooth transition for students.

Here are my 10 Back to School Tips:

1. Prepare the student with a visual countdown calendar, and re-instate morning/evening routines before school starts.

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 several times before school starts.

3. At the tour, whether it’s in person or virtual, ask the teacher to show you the Covid-19 safety precautions, accommodations and equipment that is listed in the IEP to make sure everything is in place.

First Then Visuals

Nick using the Smart Board

4. Prepare a student “About Me” profile sheet. There are many templates available online. You can include different sections such as, Things I love, My Strengths, What Works Best for Me, How to best support me, What Doesn’t Work for Me, 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.

Daily Report Sheet

6. Review the child’s IEP to insure that all goals and accommodations are still relevant. Note any additional needs or concerns you have coming off of the summer break and remote learning. Share these with the staff at school.

7. If the student has a behavior support plan, 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 may need to be addressed.

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 due to summer break and remote learning due to the Covid-19 Pandemic. 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 for students in your school?
Time Timer App
Choice Boards

10. Show your commitment by staying on top of your child’s progress. Ask for data within the first 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, invested and aware of your child’s needs will help them reach their full potential for the new school year. As students re-enter school after a long break, let’s also remember to extend each other some grace, be flexible, and give time and space to establish the new normal, whether you are heading back into the classroom or working remotely.

That’s what is in my noggin this week.

~Teresa 🙂

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

Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy

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 Savvy is 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.

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

Blog #232~Special Needs Parent and Educator Help During Covid-19

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:

https://www.catherinewhitcher.com/blog/podcastcriticaliepdecisions

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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Facebook and Instagram at Down Syndrome with a Slice of Autism

Twitter @tjunnerstall

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

Blog #226~Beyond Down Syndrome: A New Course

Blog #226~Beyond Down Syndrome: A New Course

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

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

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

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

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

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

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

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

TU_5-5x8-5_WPS_ebook

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

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

That’s what is in my noggin this week.

~Teresa 🙂

LOGO TRANSPARENCY (5)

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

DS-ASD~IEP’s and Advocating for Your Child

Do you have an IEP coming up for your child? Are you currently having concerns about your child’s IEP? Click on the following link to learn how to advocate for your child and collaborate with the school IEP team more effectively:

https://nickspecialneeds.com/tag/parent-input-in-iep/

Parents are an equal and vital part of the IEP process and team. Remember you know your child the best. That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick, age 25 with a dual diagnosis of Down syndrome and autism (DS-ASD):

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:

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Instagram #nickdsatuism

Twitter @tjunnerstall

 

 

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

Blog #199~Take Action Before the School Year Ends

Blog #199~Take Action Before the School Year Ends

How’s the school year going?  If you have a child with special needs; who is non-verbal or limited in speech, it’s difficult to know how they are navigating their day.  This is where you as the parent, have to be pro-active regarding your child’s progress.  Are they achieving the goals set in their Individual Education Plan (IEP)?  As a parent of a child with a dual diagnosis of Down syndrome and autism, I’ve learned the importance of staying on top of my son’s progress and behavior while in school.  Mid-year is a critical time to re-evaluate the teaching methods and current goals set in place, to help your child succeed.

Here are five things parents can do now, to take action before the school year ends:

#1 How are you communicating with the school staff?

If you child is non-verbal or limited in speech, it’s imperative to find a way to dispatch information daily via email, text and/or a communication notebook.  Daily reports work can be created and customized to share about your child’s day, like these……

daily check sheet   daily check sheet two

#2 Organize all correspondence with the school and staff.

Use one notebook or binder for all meetings, conferences and IEP’s so you can refer back at anytime.  Keep all documents in this binder regarding your child, so it’s at your fingertips.  Log in dates and times of any correspondence with school.  Keep all school emails in a separate folder, on your computer.

#3 Review your child’s Individual Education Plan (IEP).

The IEP outlines academic and functional goals, supports needed, accommodations and services. Compare the current IEP goals to the quarterly reports.  How much progress has your child made in each goal area?  Are there any red flags (No Progress- NP)?  Make notes of your concerns.  What additional supports or accommodations that might better help your child succeed?

Examples of supports and accommodations:

Ex/ Halls or assemblies are crowded and loud.  The student experiences sensory overload, leading to meltdowns.  Add supports and accommodations such as noise cancelling headphones paired with a break card.  Have the child transition five minutes before the bell rings when the halls are quiet.

Break Icon   noise cancelling headphones

Ex/ Student shuts down to avoids a task, because it is too difficult.  Break down the task into individual steps supported with a visual task strip.  Set them up for success!

counting task strip       Nick packaging door knobs_Habitat_4 (2)

#4 Contact your child’s teacher to discuss ways to keep your child on track for the rest of the school year.

Request a meeting with the IEP team if there are setbacks in behavior, or “No Progress” (NP) being made on IEP goals.  Goals and the behavior plan can be adjusted anytime during the school year.  A meeting may be necessary if there are any new behavior problems that need to be addressed.

Ex/ Student needs motivation to complete work.  Create an incentive chart to work and earn a reward.  Brainstorm with the school staff to find a reward that is highly motivating for the student.  This  particular reward should only available upon completion of tasks.

working for chart

Ex/ Student has difficulties transitioning to the  next activity.  Make visual schedules for the student to navigate their daily routine.  Giving the student control with visuals, will help to reduce anxiety, and foster independent living skills.

APE swimming 006 (4)

Visual timers help a student stay on task, and then transition to the next activity….

visual timer app

#5 Look at the big picture of your child’s current growth and well-being.

Are the current goals ultimately promoting your child’s further education, employment and independent living?  Are the goals meaningful and relevant for their level of performance?

Does your child look forward to going to school each day?  Are there any signs that your child is withdrawing or regressing in performance and behavior?

Make notes and meet with the teacher at any time before the next IEP meeting. Collaborte together with the school IEP team, to make adjustments and accommodations as needed regarding goals and behavior.

IEP-Picture

Consistent communication, organization, and IEP goal and behavior reviews, are essential for a parent to do, throughout the school year.  Collaboration with the school staff will ensure a strong finish, for the remaining semester.  This will also make team planning for the next school year much easier, with no surprises.

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 Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs, IEP (Indivdualized Education Plan)

Blog #195~ Being a Firestarter

Blog #195~ Being a Firestarter

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are “Firestarters” and, because of them, the world is a much different, and often, better place.

Fire

Are you looking for a way to ignite your life and dreams?  Firestarters-How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Own Life,  is a new book released last week; that will help you to do so. As I wrote in last week’s Blog #194, Firestarters are innovators, instigators and initiators that get things accomplished.  Recently I had the opportunity to interview one of the co-authors of this new and powerful book, Paul Eder along with a featured Firestarter, David Egan who is an advocate for special needs.  This week, I am sharing more on these interviews about being FIRESTARTERS!

Firestarters

David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.  David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David Egan-Advocate Photo

He believes in promoting the idea of people with disabilities having special talents.  David states that people with intellectual disabilities should be included in as many sectors of our society as possible, and being featured as a leader in this book makes made him proud.  The most important part of his advocacy is to demonstrate that people like himself are Valued, Able, and Ready to work.

David Egan Work Photo         David Egan swimming

“We are citizens that matter and we belong in our community.” -David Egan

David-Egan-Capitol-Hill-2011

“People with intellectual disabilities do not want pity; we want respect, inclusion, and the opportunity to reach our full potential like any other citizen.” -David Egan

Paul Eder is the co-author of Firestarters along with Raoul Davis JR. and Kathy Palokoff.  From early on, Paul Eder wanted the book to be inclusive.  He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.  Paul says that a Firestarter is partially defined by the impact you have on others. His son, Brady has certainly impacted his life.  Paul hopes his son’s achievements go beyond and push the boundaries like David Egan.

I asked Paul how he plans to use the concept of Firestarters to help navigate his son through school and working with IEP team members? 

Paul said that, “The IEP (Individualized Education Plan),  generally taps into a number of the concepts we discuss in the Firestarters book, but the section on Accelerants is very relevant. Accelerants include: Mission-focused behavior, Cooperation, Constructive competition, sweat equity (working hard), and support seeking.”

Paul goes on to further state this about IEP’s:

“An IEP certainly focuses on the mission surrounding your child’s educational path. From a cooperation perspective, the IEP defies all the supporting partnerships that are necessary to propel his success.  All of the IEP goals are measurable, which gives it a competitive flair. We want the goals to be challenging but not impossible, and we want to be able to compare his progress against some standard of success (e.g., grade-level expectations). My son has a daily behavior log where his social and academic behaviors are tracked. From this sheet, we are able to tell whether he is putting in his full effort and devoting the sweat equity needed to learn. Support-seeking is an obvious one.”

“The IEP team is a support structure in itself.  As parents, we can’t be afraid to ask the questions needed of the team and push for the supports required to ensure his success.” -Paul Eder

I asked Paul how can someone support the Firestarters in their lives, especially those with potential but who may have special needs?

In the book we define 4 types of supporters based on the research we conducted:

1.Nurturers listen and help you follow through with your ideas.
2.Motivators get you moving. They are people like Tony Robbins who exude an energy that make you want to be a better person.
3.Illuminators are the teachers in your life who help you grow socially and intellectually.
4.Protectors are the people who defend you when others won’t.

A FIRESTARTER, seeks support to fan their flame, and finds ways to limit the influence of Extinguishers.

As we begin 2018, what do you want to accomplish?  Find the people who can support you and don’t allow the extinguishers to have power over your life.  We’ve all met FIRESTARTERS, and seen what they’ve accomplished.  They create, disrupt and start things.  The book FIRESTARTERS  interviewed successful entrepreneurs, CEO’s, organizational leaders, advocates and forward thinkers from a variety of professions to find out what makes them tick.  There are step by step guides to teach you how to join the ranks in whatever you want to accomplish.

For more information about FIRESTARTERS click here: https://goo.gl/4VmHKo

Thank you to Paul Eder and David Egan for sharing your inspiring stories of being FIRESTARTERS, who make the world a better place!  That’s what is in my noggin this week.

~Teresa 🙂