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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Join us on our new Facebook Page: A New Course Book Launch to get the more inside the scenes and exclusive tidbits about A New Course: A Mother’s Journey Navigating Down Syndrome and Autism.

Twitter @tjunnerstall

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:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

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 🙂 

 

 

 

 

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

Special Needs Back to School Tips

Special Needs Back to School Tips

backtoschool1

Kleenex, glue sticks, crayons, and more, are all jotted down on the shopping list.  It’s that time of year to get ready to go back to school.  But what should you be doing as a parent of a child with special needs?  I’ve got 5 great tips to get you started on the right track!

5 Back to School Tips for Special Needs Parents:

Click here to view these 5 tips- https://nickspecialneeds.com/2016/08/22/blog-153special-needs-back-to-school-tips/

Make it a great school year, 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 Behavior/ ABA, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan)

Blog #179~Down syndrome and Autism-Unlocking Your Child’s Potential

Blog #179~Down syndrome and Autism-Unlocking Your Child’s Potential

When your child has a dual diagnosis of Down syndrome and autism, the game changes.  Speech may be limited or even non-verbal, which may lead to behavior problems.  Sensory issues can be extreme and interfere with social interactions and learning.  My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  His speech is limited, and he is a sensory seeker.  Over the years, with the help of some amazing teachers, therapists, and autism behaviorist specialists, he has developed skills which have allowed him to contribute both working in his adult day program, and here at home.

So how do you find the key to unlock your child’s potential?

padlock-unlocked_318-40940The key lies in identifying your child’s strengths, and working to build upon them.  First of all, just because my son’s speech is limited doesn’t mean he can’t communicate.  One of Nick’s assets is his receptive language, which is the ability to understand information.  Many of his goals in his IEP (Individualized Education Plan), were planned around using this strength when he was in school.  Nick was able to develop skills to become more independent in self-help, and other jobs both at home and school.  These skills were enhanced by using educational materials and supports that were written into his IEP.  Such materials included a PECS book (Picture Exchange Communication System) with training for staff, parents and child, Augmentative Alternative Communication (AAC) devices,  task strips, social stories, a picture schedule, video modeling, and a reward system.  All of these supports helped Nick to navigate his routine and built upon his functional and independent livings skills.

APE swimming 006 (4)

Besides his receptive language, Nick’s other strengths are his desire to please and take the initiative.  He is a taskmaster!  When Nick was younger, his teachers pointed out how good he was at matching.  A lot of his goals were structured around this.  Nick has always had a keen eye, and notices where everything goes around the house.  Anytime the batteries died on one of his musical toys, he would go to the kitchen drawer, pull out the screwdriver and hand it to me with the toy.  As he grew older, I recall him nudging his older brother over to help unload the dishwasher.  He knew which cabinet every single plate, cup, pot, pan and utensil were stored.  Shortly thereafter, I let him take over the chore (with no complaints from his older brother, Hank). 🙂

Nick still takes great pride in unloading the dishwasher today!

Nick dishwasher two

Here are some other ways the taskmaster takes initiative:

Nick getting out ingredients and utensils for his salad….

Nick dinner prep

As soon as he saw the pan of water on the stove, he went to the pantry and pulled out the ingredients to make pasta…..

Nick past cooking

Using his strength of taking the initiative, we have built upon this to create other jobs both at home and in the community.  When he was in school, his teachers recognized his sensory seeking needs and channeled them by doing “heavy work”.  An occupational therapist can assist with ideas to implement a sensory diet into your child’s routine. Nick likes to throw and swipe things (and still does).  It has helped to find activities with heavy work or that mimic this sensory need.

Here are a few of the jobs that does:

*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)

Nick working at a residence facility in high school….

Nick vacumming_Tabor Hills (3)

Nick doing volunteer work at GiGi’s playhouse with in his current adult day program…

nick-cleaning-gigis

There is so much your child can learn when you identify their strengths and unique talents.  When you find what motivates your child, you can build and expand upon it.  Work with your child’s IEP team, therapists and autism specialist, to identify those areas.  Then together as a team, create a plan with specific and measurable goals, that will enable your child to grow and be successful.  Unlock your child’s potential, and watch them soar!  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, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #173~ IEP’s and Advocating for Your Child

Blog #173~ IEP’s and Advocating for Your Child

IEP-Picture

It’s the merry month of May, or IEP season for parents who have a child with special needs.  How do you advocate to get the most appropriate program and services for your child?  IEP stands for Individualized Education Plan. The IDEA law, ensures that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.”

This purpose should drive the needs of your child, because it is necessary for them to be prepared for further education, employment, and independent living”.  My son, Nick has a dual diagnosis of Down syndrome and autism.  His IEP goals, and supports have focused on his abilities to do everything possible to work towards this purpose and what is realistic for him upon completion of school at age 22.

scan0016

So back to my first question….. How do you get the most appropriate program and services for your child? 

There are three things that you can do as a parent to advocate for your child.  These include the following:

 1. Provide parent input

2. Examine & evaluating your child’s current IEP 

3. Building goals based upon your child’s strengths

#goals

Parent input should include what you want to see your child doing towards the purpose of “preparing them for further education, employment and independent living”. 

*What academic goals can you put in place now that will drive them to be more independent in the future?

*How will your child interact with other peers and staff in social situations?

*How will your child do with social skills when out in public?

*What methods of communication will be used for your child to express themselves?

nick aac

The second way you can best advocate for your child is to evaluate their current IEP.  Take a hard look at each section including your child’s level of functioning, academic achievements, goals, special education & related services and accommodations.  The focus should be on what your child CAN do with measurable goals.  Here are some questions to ask:

What supports and modifications are needed to assist your child?

Does your child need a visual schedule?  Is there any equipment or sensory related items that are needed to help with learning and navigating the building?

Will their be a shared or 1:1 aide provided for your child if they need additional support?

If your child is not making any progress on a goal, then it needs to be looked at.  For instance a goal of tying shoes may need more support and visuals from the occupational therapists.  Then again, is the goal of tying shoes going to be important in another 5 years, or can you make another accommodation, move on and work on a different goal?

shoelaces

Once you have re-evaluated your child’s current IEP, schedule a meeting with the support teacher/ case manager to review your findings and decide on what goals would be best for your child moving forward I would also suggest sending an email to the classroom teacher, therapists, and social worker to get their input on re-vamping the goals.  This should all be done at least a month before the scheduled IEP meeting.

Be sure and request the proposed draft of the new IEP, including all reports from each team members, along with the goals proposed for your review BEFORE the actual meeting.  This will insure that you are an informed member of the team, and be a vital part of the decision making process and be a vital part of the decision making process making process.

goals

Goals should always build upon their strengths.  My son was never interested in writing  Any marker or pen given to him ended up with scribbles all over his clothing and skin.  Nick was just not motivated by any goal to write.  But what he was really good at matching.  Many of his academic goals were driven by using supports that involved matching.  So instead of writing Nick, the support teacher made a worksheet where he would cut out the letters N-I-C-K and glue them under a template.  This allowed Nick to work on name recognition and cutting skills.  This is a great example of modifying the curriculum to suit the level of student functioning.

Another example is money handling skills.  Nick’s goal in elementary school was to work on the “dollar over” method.  If an item was $1.49, he would count out two dollars (one dollar + one more dollar for change back).

dollar bills

Later in high school, the goal was changed to using an ATM card (which is what most people use in society today).

Taking on the role of advocate for your child insures that they your child will get what they are entitled under the IDEA law.  Preparing yourself with vital parent input, examining & evaluating their current IEP, and working with the teacher to build goals that promote learning and independence will result in a solid education plan for your child, and their future success.

In closing I will add this last point, that your child’s IEP should be constructed on your child’s unique needs, and NOT what the school district says they can offer and afford. Avoid asking what the BEST program is for your child, instead ask for a more APPROPRIATE program for them.  That’s what is in my noggin this week.

~Teresa 🙂

IEP2

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

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

Blog #157~Making Inclusion Work

Blog #157~Making Inclusion Work

Is inclusion right for your child?  That was the question I addressed in last week’s post.  Inclusion simply stated, means that a student is supported in the general education classroom setting with given supports outlined in the IEP.  The IEP is an Individualized Education Plan, is a document for special education students.  This document identifies how the student will learn, what services the school will provide, and how their progress is measured.  My son Nick, was in an inclusion classroom during his elementary school years. He has Down syndrome and autism, and benefited greatly from the experience.  How do you make the inclusion setting work for your child with special needs?

The Individuals With Disabilities Education Act (IDEA), amended version 2004, does not actually list the word inclusion. The law actually requires that children with disabilities be educated in the “least restrictive environment appropriate” to meet their “unique needs.” The “least restrictive environment” typically means placement in the regular education classroom which typically means ‘Inclusion’ when ever possible. (Source taken from about.com)

The IEP team works with the parents to determine the least restrictive environment and builds the placement around this concept.  What will the child need to be successful in a regular education classroom?   The IEP team and parents should collaborate to identify supports needed.

Classroom Supports:

*Modified Curriculum:  (Regular education teacher and support/case manager) work together to adapt the current assignments for the child.  Make a plan to address what will be learned in the regular classroom, and how will the student will learn that similar information?

visual work board

*Staffing:  Does the child need a paraprofessional (classroom aide)?  What is the ratio? What additional training will be needed?

*Equipment:  Physical environment (modified desk, chair, adaptive equipment/school supplies, sensory supports)

*Assistive Technology:  Communication (Alternative Augmentative Communication “AAC” device, Picture Exchange Communication System “PECS”, Sign Language/Interpreter), or other devices using apps for to navigate schedules and assignments.

alphabet tracing  ipad-touch-chat

*Sensory Breaks: What space will be provided, is there a sensory area in the school?  How will the student request a break (need a break icon, button on AAC device)?  What equipment is needed, (noise cancelling head phones, figit toys, nubby cushion, music, weighted vest or blanket, bean bag chair, swing, trampoline)?

figit toys   nubby therapy cushion

In addition to identifying classroom supports, the team should address these questions at the IEP Meeting:

* What are the student’s strengths, and how do we build a plan around them?

*How does the student learn best?

*What behavior support is needed to help the student learn the best, and operate comfortably in the general education classroom?

Identifying supports needed and how to best accommodate the student will set a good foundation to success in the inclusion classroom setting.  The student will benefit by having access to the general curriculum and build social relationships in this community in the least restrictive, inclusion environment.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

scan0016

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram: #nickdsautism

Twitter: @tjunnerstall