Month: September 2016

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

Blog #157~Making Inclusion Work

Posted on by Teresa Unnerstall

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 Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #156~Is Inclusion For Your Child?

Posted on by Teresa Unnerstall

Blog #156~Is Inclusion For Your Child?

Are you raising or involved with educating a child with special needs within an inclusion setting?  Perhaps you are considering  an inclusion classroom for your child.  If so, then THIS is the book you need to read:

whos-the-slow-learner

Who’s The Slow Learner? A Chronicle of Inclusion & Exclusion, written by Sandra Assimotos McElwee (Outskirts Press) is a great book and and resource on inclusion.   Her son Sean McElwee was born with Down syndrome.  Sean is now 22 years old and is one of the star cast members of the Emmy Award Winning series, Born This Way on A&E.  

Her goal for writing this book was to educate and inspire, while chronicling her son’s education experiences.  In Sandra’s words, “This is not a ‘How-to’ book, but a ‘How we did it’ book.”

What is inclusion?

Inclusion is a term which expresses commitment to educate each child, to the maximum extent appropriate, in the school and classroom he or she would otherwise attend.  It involves brining the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students).  Proponents of inclusion generally favor newer forms of education service delivery.

Full Inclusion means that all students, regardless of handicapping condition of severity, will be in a regular classroom/program full time.  All services must be taken to the child in that setting.  

(From Sandra’s book this information was taken from the Wisconsin Educational Council’s Website)

Inclusion not only benefits the special education student, but also the regular education students in class.  It can be highly successful with the right supports, accommodations, modifications and supportive school staff.  From my own experience, I found this to be the case with my son Nick, who is also 22 years old and has Down syndrome and autism.

Sandra offers a wealth of information in this book.  Each chapter begins with all Sean’s IEP goals for that school year.  The book is loaded with great ideas on how to navigate the school system and how/when to reach out for outside help using consultants to advocate for your child.  This was the case when Sean transitioned into intermediate school, where they determined a need to put a behavior support plan in the IEP.  Sandra provides this full behavior support plan in the book as well, which is very beneficial.  Getting outside support for communication and behavior also helped greatly during the adolescent years with my son, Nick. Keeping in the loop with staff and volunteering in the school and classroom is another great way to keep up with how your child is doing in school.

There are so many valuable lessons that Sandra learned and shares about her son’s educational journey.  Many of which I can relate to having gone through this with my son, Nick.  You are not always going to have a school team or some of the members supporting inclusion for your child.  Sometimes it’s the school staff that are the slow learners.  In this book, you can see how Sandra had to advocate even harder during the intermediate and high school years. Unfortunately this was not always a success. But these actions set the foundation, to make it easier for other families to follow.

The book not only contains a wealth of education information, but many funny and inspiring stories on how Sean touched so many lives.  In one story, Sandra gets out of the shower and noticed the unmistakable odor of popcorn being microwaved.  She fully expected to smell a burnt popcorn next, so she hustled quickly downstairs.  To her surprise, Sean had just opened a perfectly cooked bag of popcorn.  She asked Sean what number he pushed?  Sean looked at her like she was crazy, and pointed to the control panel and said “popcorn”.  It turned out that the all the site words Sean had been learning in first grade were working. Sandra didn’t even know there was a popcorn button on the panel.  In this case she, was the slow learner.

Who’s The Slow Learner? is not just for parents, but a great resource for educators, future regular & special education teachers, school administrators and advocates.  This is the first book that chronicles a student with special education needs from pre-school to high school graduation.  It’s a very instructive book that shows a mother’s determination to advocate for the best available resources in not always a cooperative educational system.

I’m sure this book will benefit many considering inclusion for their child with special needs, and the education team that will be providing for them. That’s what is in my noggin this week.

~Teresa

Catch Sean and his family on the Emmy Winning Series, A&E’s Born This Way, Tuesday nights at 9pm (8pm Central)!

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Follow Nick:

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Facebook and Pinterest: @Down Syndrome With A Slice Of Autism

Instagram: #nickdsautism

Twitter: @tjunnerstall

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism

Blog #155~More Than Down Syndrome,DS-ASD

Posted on by Teresa Unnerstall

Blog #155~More Than Down Syndrome, DS-ASD

My son, Nick has Down syndrome. There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to the local support group holiday parties, play groups and other fundraising events. My son, Nick lacked speech and displayed unusual and repetitive behaviors. These stimming behaviors included tapping, shaking and throwing objects. Vocal stimming and yelling was another behavior that he exhibited. His speech delays and inability to communicate, resulted in frustration on his part, which led to behavior problems and meltdowns. It became apparent that this was more than just Down syndrome, when he hit puberty.

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We approached the elementary school IEP team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff. It didn’t seem like any of us, could get a handle these problems both in school or at home. The school IEP team was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”. Rather than push the matter with the school, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out-of-pocket.

It was money well spent. Nick got the new diagnosis of Down syndrome and autism (DS-ASD). If you suspect that your child’s behaviors might be related to more than just Down syndrome, I would strongly suggest that you get a referral from your primary care physician to get an evaluation for autism.

The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son...….

magic key

Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome. Obtaining these services took some time, but the effort to get them, has been well worth it. These services were provided in part, by the school district and outside agencies:

*Behavior Support was requested from the school district, A BCBA certified autism specialist did a Functional Behavior Assessment (FBA). This lead to the development of a Behavior Support Plan (BSP), specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns. BSP’s can also target skill development in a variety of areas like toilet training which is very challenging. After the BSP was put into the IEP, we collaborated as a team. We built in specific visual supports and sensory breaks into his day, which helped him to stay focused and regulated.

*Speech Support and training on how to properly implement a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

ipad touch chat.JPG         photo (123)

*Toilet Training and workshops for home support  This included coaching on how to develop and implement a timed toileting schedule and use visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This is funding for respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)  A federal  income supplement program funded by general tax revenues (not Social Security taxes). It is designed to help aged, blind, and disabled people, who have little or no income; and it provides cash to meet basic needs for food, clothing, and shelter.

Getting the secondary diagnosis label of Down syndrome and autism (DS/ASD), helped the school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors and additional needs. By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick. It’s important to note that with co-occurring DS-ASD, the autism symptoms often supersede over those related to Down syndrome. Behaviors and additional needs associated with DS-ASD are complex.

DS-ASD Ribbon

As a result of obtaining these supports, Nick’s communication improved, allowing him to feel understood, respected and less frustrated. As a family, we felt better assisted with the training provided from the BCBA and our local autism center. Applying for the state waiver and securing the funding for respite staff took some of the burden off us.

If you suspect your child with Down syndrome may have autism, read this link by the National Down Syndrome Society for the signs and symptoms: https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

Additional resources for navigating a dual diagnosis of Down syndrome and autism:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals and Supporting Positive Behavior in Children and Teens with Down Syndrome books:

down-syndrome-and-autism-intersect

Book Supporting Positive Behavior DS

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

*Facebook Support Groups:

-Down Syndrome With A Slice Of Autism

-Autism Discussion Page (Bill Nason)

-The Down Syndrome-Autism Connection http://www.ds-asd-connection.org

The challenges of having a child with co-occurring Down syndrome and autism (DS-ASD) are unique. So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated. You as the parent, know your child best.  If you suspect that your child with Down syndrome may have symptoms associated with autism, I strongly suggest that you take action to get a clinical, medical evaluation. The autism label doesn’t change who your child is as a person, it gives you a better understanding how to meet the child at their own level.

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick:

Facebook, Instagram and Pinterest @Down Syndrome With A Slice Of Autism 

Twitter @tjunnerstall