Posted in Down syndrome, Down Syndrome Awareness, Education and Special Needs, Resources for Special Needs

Blog #221~Inclusion in a General Education Classroom for Students with Down Syndrome

Blog #221~Inclusion in a General Education Classroom for Students with Down Syndrome

Down syndrome awareness ribbon

October is Down Syndrome Awareness Month.  An individual with Down syndrome can be included in a general education classroom with the right support, accommodations and curriculum modifications.  This requires collaboration with the school team and understanding the needs of the student.  Inclusion education happens when children with and without disabilities participate and learn together in the same classes.  How can you advocate for an inclusive education environment for a student having Down syndrome?

*Inclusion in a general education classroom starts with a school team who is aware and understands what the experience can look like.  If the school does not support inclusion, the parent (and bringing an advocate on board) can help to educate the staff.  There is no one size fits all on inclusion, as each student is individual and unique in their needs. Inclusion is not a place, but rather an experience. Finding the right teachers, who are willing to set an open environment in the general education classroom is also a key ingredient to the success of inclusion.

Here are some examples of how inclusion can work:

http://www.friendshipcircle.org/blog/2014/02/05/10-examples-of-inclusion-for-those-who-need-to-se

Educate your school and community by hosting a screening for Inclusive Schools Week.  “Inclusive Schools Week is a proud partner with INTELLIGENT LIVES, the groundbreaking new documentary by Dan Habib. Narrated by Academy-award winning actor Chris Cooper, the film stars three pioneering young adults with intellectual disabilities – Micah, Naieer, and Naomie – who challenge perceptions of intelligence as they navigate high school, college, and the workforce. The film can now be screened in every community across the USA – host your own screening for Inclusive Schools Week! Intelligent Lives can help you advocate for change, raise funds for your organization, and open doors to inclusive education and employment for people of ALL abilities.” Go to http://www.intelligentlives.org to watch the film trailer and to learn how to host a screening in your communitye-it-to-believe-it/

Watch the trailer:  https://intelligentlives.org/trailer

*Create a one page profile sheet of your child to share with the school team and class.  There are many great ideas on Pinterest to create this.  

Here are some suggestions with examples on what to include:

-Picture of student

-Strengths (counting, matching, visual learner, receptive language, funny, wants to work)

-What works for student (visual schedule, patience, positive reinforcement, reminders before transitions)

-What doesn’t work for the student (sudden changes in schedule, taking something away, saying no or talking to firmly)

-What the student enjoys (music, making friends, Starfall computer game, dancing)

What the student needs (checklists, visual schedules, motor breaks, sensory break area, etc.)

*Inclusion works best with a solid Individualized Education Plan (IEP) and when the student is supported with a classroom aide/paraprofessional.  

Nick work aid

*Inclusion works best when the IEP includes all needed accommodations and modifications in the curriculum.  Accommodations are the tools needed for the student to succeed in the classroom.  Some examples might include a special pencil grip, nubby seat cushion, visual timer, calculator, built in motor breaks, communication device or picture exchange system (PECS) book.  Modifications to the curriculum allow the student to learn the grade level material , but simplified.  This helps the student learn at their own level what is most meaningful for them.  Goals in the IEP should be driven to promote further education, independence and future employment skills.

Here are two books that I recommend for learning more about how inclusion works for individuals with Down syndrome:

Inclusion in ActionWho's The Slow Learner

As I mentioned in last week’s blog post, Woodbine House also has many books about teaching reading and math skills for individuals with Down syndrome.  This month Woodbine House is offering a 30% discount on these books:

Click here to view the selections https://www.woodbinehouse.com/

Inclusion in a general education classroom can work for individuals with Down syndrome.  It benefits all students, and promotes a since of community and acceptance, that individuals with intellectual and developmental disabilities desire.  With the right attitude, support, accommodations and modifications, inclusion in a regular classroom setting can be a rewarding and successful experience for individuals with Down syndrome, their peers and the school staff.

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick who is 24 years old and has a dual diagnosis of Down syndrome and autism:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

Blog #217~DS-ASD: Why the Autism Label Matters?

Blog #217~ DS-ASD: Why the Autism Label Matters?

Over the years I’ve read countless stories of parents struggling to get an autism evaluation and diagnosis for their child who has Down syndrome.  IEP (Individual Education Plan) teams often tell parents that, there is no need to get an autism label, because they already have a primary diagnosis of Down syndrome that they can work with.  A doctor may dismiss the idea because the child makes good eye contact, and is highly social.  This is my story as well with my son, Nick who is 24 years old and has a dual diagnosis of DS-ASD.  So, why does the autism label matter?

The book “When Down Syndrome and Autism Intersect, A Guide to DS-ASD Parents and Professionals” by Margaret Froehlke, and Robin Zaborek, states that:

“It’s only in  the past 10 to 20 years that we’ve learned that up to 18 percent of persons with Down syndrome will also have autism or ASD (autism spectrum disorder).  This is information that most healthcare professionals are not aware of and underscores the importance of this reference guide.”

Down syndrome and autism intersect2

Getting the secondary diagnosis of autism for an individual with Down syndrome will open up new doors for services to address the unique needs associated with DS-ASD.  For a parent, it validates what they have suspected for quite some time, and allows them to move forward to get services and support for their child.  Honestly, I was sad at first to receive the news of an autism diagnosis.  But eventually, I realized that this label explained the speech deficits, complex sensory, stimming and violent behaviors that Nick was exhibiting.  I rolled up my sleeves and sought help from the school IEP team and support groups to figure out how to help my son.  The secondary formal diagnosis of autism, enabled us to access the services from the district’s Autism Consultant.  This was the key to opening up new doors that helped in the areas of behavior and communication.

Behavior and communication go hand in hand.  As a child matures and approaches puberty, the behaviors can escalate to meltdowns that endanger themselves, family and school staff and peer students.  It is essential to determine the function of these behaviors and get a positive behavior support plan in place.  Evaluating the mode of communication is the second piece of the puzzle that must be addressed.  If a child is frustrated due to lack of speech or being non-verbal, they will often act out through their behaviors.  Individuals with DS-ASD may act out because they are trying to make sense of their world.  That is why a positive behavior support plan and mode of communication can enable a child to make their needs known, so they can get these wishes met.

autism-scrabble-letters-by-Jesper-Sehested

A BCBA Autism Consultant typically observes the child and takes data on behaviors by doing a Functional Behavior Analysis (FBA).  This detective work will uncover what is causing the behavior and lead to developing a behavior plan to support the child.

Frustrated icon   Detective-clipart-animation-free-images-2

Once the target behaviors have been identified, the Autism Consultant and IEP team members, along with the parents, can collaborate to find strategies to support the child.

For example if a child hits or pinches himself (Self-injurious behavior known as SIBS), or hurting others.  The Autism Consultant would determine possible causes and the setting in which it took place, and what the function of the behavior could be (avoidance, escape, boredom, etc..).  Possible antecedents might include:

*Diverted staff attention

*Unstructured/wait time

*Loud or crowded environment

*A change in activity to a non-preferred activity.

*Disrupted routine

*An object or activity is taken away

Supports can be put into place so that the child better understands what is expected.  A visual schedule, social stories, and communication mode (Picture Exchange Communication System knowns as PECS, or a higher tech, talker device) can be determined and put into place to allow the child to express their feelings, wants and needs.  The use of sensory diets and breaks, using noise cancelling headphones help the individual cope in stressful, crowded and loud environments, or regulation when the child is over or understimulated.

Providing behavior and communication support and strategies interventions for individuals with a dual diagnosis of DS-ASD will make a positive impact both at school and in the home setting.  In addition, the secondary diagnosis of autism opens up doors to more services and funding from state for respite care and behavior support at home. Having outside help with respite care, relieves the burden of stress on the family, and enables parents to continue to enjoy personal interests and taking a break outside the home.

Getting a proper and formal assessment and evaluation for a dual diagnosis of Down syndrome and autism is a game changer.  Individuals with DS-ASD experience the world differently than just having Down syndrome or autism alone.  Intervention and support strategies can be targeted to the individual to specifically address behavior, communication and sensory needs for the child.  Finally, the second label of autism, will open up doors to support groups and additional funding for waivers that provide in home support and respite care for weary families like mine.

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, Parenting Special Needs, Uncategorized

Blog #206~ Stop Procrastinating

Blog #206~ Stop Procrastinating

no-procrastination

“Procrastination is the thief of time.”  It’s not always about being lazy, sometimes it is rooted in other causes.  So why do we procrastinate?

procrastination-powerpoint-14-638

Being a parent of a child with special needs, brings additional pressure.  There are many responsibilities of being their caretaker, that are lifelong.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  Taking care of my son is a never ending job.  Yes, sometimes I have check out and binge watch shows on HGTV and Bravo.  We all need some time to escape, but not at the expense of shrugging our responsibilies.  Perhaps, I’m writing this piece to remind myself to be more disciplined.   So, how do you kick the procrastination habit?

Here are 5 Tricks to Kick the Procrastination Habit:

1. Set Goals

Define what needs to get done and hold yourself accountable.  Re-assess your goals on occasion to make sure your priorities are where they need to be at this point in your life.  Commit to your goals!

#goals

2. Define Mini-Tasks

Breakdown your goals into smaller, more manageable tasks.  Ask yourself what steps need to happen to reach your goals.  For example, say you want to create and organize an IEP binder for your child.  An IEP (Individualized Education Plan) binder can help you prepare for IEP meetings and better collaborate with teachers and other IEP team members.  Break down creating this binder with tabs for each section (communication, evaluations, copy of IEP, report cards/progress notes, sample work, and behavior).  Breaking this project down into mini-tasks will be less overwhelming and easier to handle in stages.

iep-binder-1740x979

Click here get started on your IEP binder:  https://www.understood.org/en/school-learning/special-services/ieps/how-to-organize-your-childs-iep-binder

3. Make Lists

I use to make fun of all the lists my Mom had going around our house, growing up.  But you know what, Mom was right, they do keep you organized and focused.  To do lists help track your goals.  There is a real satisfaction to checking off items after you’ve completed the tasks.  It rebuilds faith in your own abilities when you complete action items on a given deadline.

checklist

4. Eliminate Distractions

Cell phone alerts, social media, TV and a cluttered work space will distract you from working.  Free yourself of these, so you stay focused on your tasks.  Clutter is the enemy that is both dibilitating and anxeity ridden.  This weekend I cleaned out and purged my bathroom drawers and cabinets.  Why?  Well, A=It was raining and B=I couldn’t find one bobby pin.  The end result, I threw away a big bag of stuff I wasn’t even using.  I won’t be rummaging around the clutter, and wasting valuable time in the mornings.  Oh, and I found a lot of bobby pins 🙂

5. Carve Out Time That Works For YOU

You know yourself, and when your energy level and focus is most productive.  I say this all the time to my fitness class participants.  I’m NOT a morning person, so I do everything I can the night before that I can to prepare for the following day.  This includes laying clothes for myself and my son, jotting notes in his communication journal, and planning my fitness class agenda for work.

Nick’s grooming bin…..

photo (118)

It’s also important when you have a child with special needs, to get things done when it is quiet so you can concentrate.  I never try to write or edit when my son is home.  Instead, I take advantage of the time when he is at his adult day program to do the tasks that require a lot of focus.  Also, be sure and carve out free time for extra curricular activities. Find the balance of both a schedule and unscheduling.

writing-schedule

Breaking the habit of procrastination can be done by setting goals, breaking those down into mini-tasks, making lists, eliminating distractions and carving out time that works for you.  Building in flexibility, forgiving yourself, and rewarding your accomplishments are positive ways to keep up your momentum.  Stop procrastinating and make good on your promises.  Share your goals and tasks with friends and family who can encourage you and help you make good on your promises.

The wise words of Benjamin Franklin said it best, “You may delay, but time will not.”

That’s what is in my noggin this week.  Now where is that list pad?  I’m ready to get things done!

~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, 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 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:

Facebook & Pinterest @Down Syndrome With A Slice Of Autism

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:

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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)

Re-Post~Navigating a Special Needs Child in School

Re-Post~ Navigating a Special Needs Child in School

back to school list

It’s that time of year. The stores are stocked with back to school supplies now.  Having a child with special needs can be challenging when dealing with the school system especially with the IEP’s.  This week, I am re-posting a blog I wrote about navigating your child with special needs through the school system.  I have included my own back to school list of things that I have learned over the last 20 years with my son Nick, who has Down syndrome and autism.  Check it out @https://nickspecialneeds.wordpress.com/2012/10/01/blog-24top-10-…through-school/

That’s what is in my noggin this week 🙂

~Teresa

 

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

Blog #88~ Parent Tips for Better IEP Meetings

Blog #88~ Parent Tips for Better IEP Meetings

My 20-year-old son, Nick has Down syndrome and autism. While driving to his IEP meeting last Monday it occurred to me that he only had one more of these next year.  With 15+ IEP meetings under my belt, I have learned a lot about how to become an effective advocate for my son.  IEP stands for “Individualized Education Plan”.  An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year.   There was a time when I was terrified and intimidated by IEP meetings. Here are some things I’ve learned to make an IEP meeting be effective and run smoothly.

brace yourself IEP

Nick’s senior portrait…… 🙂

scan0016

Here are my top 10 parent tips for better IEP meetings:

1. Establish communication with all the teachers, therapists, and other key members of the IEP team via email.  Send a communication notebook back and forth in your child’s backpack.   Attend conferences, open house events and if you can, chaperone at field trips and volunteer in the classroom.  All of these things will help to build a relationship with the staff and making you feel more comfortable. 

2. Designate one notebook for all meetings, conferences and trainings related to your child.  Keep a folder for the current IEP and progress reports.  Review these prior to the meeting. 

3. After you review your child’s goals, make notes for the support teacher/case manager of what you’d like to see for the upcoming year using an “IEP planning form”. Click on the link at the end of this blog to obtain a form.   

4. Request a copy of the IEP draft (including present level of academic functioning, and all proposed goals) to review BEFORE the meeting.  Go through this with a fine tooth comb making notes in red ink of any questions you have or things you would like to see added. 

5. Learn your child’s educational rights. Click on Wrightslaw link provided at the end of this blog below. 

6. Don’t hesitate to ask questions and seek clarification. 

7. If you feel unsure or overwhelmed bring an advocate from your local support group or a seasoned IEP parent to the meeting. 

8. Keep in mind that according to the law; schools do not have to offer the best, they have to offer what is “most appropriate” for your child. 

9. The child should be the center of focus at the IEP meeting.  A parent’s dream for their child may not be what the reality is.  Keep an open mind to this. 

10. You know your child the best.  You are a equal part of the team, speak up!

photo (116)

If you have serious doubts or concerns about the IEP, ask to take it home and review it further.  You are NOT required to sign it if you disagree or have any uncertainties.  You only need to sign that attended the meeting.  Put any concerns that you have in writing and returned them to school with the unsigned IEP.  You can request another IEP meeting.

IEP Planning Form for Parents:

http://www.greatschools.org/pdfs/2200_21-IEPplanning.pdf?date=3-11-02

Special Education Rights:

http://www.wrightslaw.com

IEP meetings don’t have to be a scary thing.  Do your homework beforehand. If you are prepared and keep the lines of communication open, then they can run quite smoothly.  That’s what is in my noggin this week! 🙂

~Teresa 🙂