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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Instagram: #nickdsautism

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Posted in Autism, Behavior/ ABA

Blog #77~Autism and Meltdowns

Blog#77~Autism and Meltdowns

I would rather write about anything else than what an autism meltdown looks like (even poop accidents).

poop icon

It’s a difficult subject, personal in nature and exposes a lot of vulnerability.  I am just one of so many dealing with these raging outbursts. My son Nick is 19 years old and has Down syndrome and autism.  So, for all of the warrior moms out there in the battlefield…. This one is for you!

When Nick was in the throes of puberty, his meltdowns were horrific.  He would destroy everything in his path.  His arms slung hard hitting, kicking, biting and drawing blood with his pinching.  These intense battles became so bad and frequent that I had to take action.  I was no longer able to control my own son.  Here is what I did……

Three things we did to get things under control:

1.  Nick was put on medication, Risperdal to help calm him down and be less agitated.

2.  I called an emergency IEP meeting and insisted that the school district’s autism specialist be brought in to help out. We tracked his behavior both at school and home to figure out what might be triggering his anger.  Then we came up with a behavior plan.  You see, every behavior communicates something.  In Nick’s case, he wasn’t being heard.

3.  The autism specialist determined that the staff, Nick and I needed to be properly trained to use the picture exchange system (PECS). The pictures gave Nick a voice that autism had robbed him of.  Finally, he felt in control.  The incidences of the teenage sized temper tantrum quickly diminished.

PECS Communication Book:

photo (123)

Fast forward to the present….. Nick has been unsettled.  He is expressing it by shoving us away.  It’s like he is saying, “Hey, I am 19 years old and coming into adult age.  Back the F#&K off!”  Nick had two serious meltdowns in the past week.  Each seemed to come out of nowhere.  But there is always something brewing inside. You just have to back track and figure out what might have been the trigger(s) to set him off.

Portrait of an Autism Meltdown: The Scenario, Triggers and Outcome

(Also known as the ABC’s: Antecedent-Behavior-Consequence) Here’s a sample form used to work on a Behavior Support Plan………

IMG01

Timeline of Nick’s Meltdown

A=Antecedents:

*Routine is off the past couple of weeks Nick’s Dad had shoulder surgery=added stress around the house.

*Nick has a runny nose and woke up way too early.

*Dinner at Nick’s Aunt & Uncle’s recently purchased home-new environment

*Al pulls into his brother’s driveway and has to back up a few times.  Nick hates it when you pull in and then have back up.  He thinks you aren’t going to stay so he panics, bangs on the window, pinches his cheeks and yells loudly.

*Nick’s bored and no one is paying attention to him.  He looks to stir things up. He sits down on the couch with his iPod, but doesn’t last there long.  He finds my purse and empties the contents it down the stairs. Then, he bonks poor Cali on the head with the can of tennis balls he is stimming on.

Poor Cali, retreats to the kitchen…….

IMG01 (2)

*Aunt Ali makes Nick’s favorite pasta dish, and has bought his favorite dessert. 🙂

little debbie cakes

*Oh no, I realize that once the Little Debbies are introduced Nick’s going to make a bee line to the shower. That’s his routine.

beelinne pic

*Sure enough, he strips down in the bathroom upstairs. The water doesn’t get as hot as Nick likes…. NOT GOOD, this is going to make him mad.

B=Behavior:

*He shivers and is pissed as I help him towel off.   I hand him his street clothes to put back on.  (I should have brought his pajamas.)  He flung them across the bathroom, then he proceeded to grab the tissue box, toothpaste, magazines, hand towel and hurl them as well. THIS IS IT…….

Point of no return

*I managed to contain him between the toilet and bathtub and shield myself as he lunges at me pinching, bruising and scratching my arms.  I use a towel much like a bullfighter does against a raging bull.  Only I am the one who becomes bloodied, not the bull.

bullfighter pic

*Nick is nearly my size.  There is no possible way to do *CPI Holds (see link below) on him anymore.  It’s more about getting him in a safe place and deflecting his blows.

calm down autistic child

It took 30+ minutes for Nick to de-compress from this meltdown, (most are 10-15 max these days).  I felt raw, defeated and exposed.  Nick started to work through his emotions.  He cursed, hit and pinched himself as if he was replaying the meltdown. My heart breaks a thousand times in these moments.

Consequence:

Eventually Nick showed remorse and said, “sorry”.   That’s when you know he has de-escalated.  He put on his clothes, said our apologies and drove home in silence.

THAT is a portrait of an autism meltdown!

The next morning, I brewed a K-cup and began to dissect what had happened to cause the meltdown.  Nick thrives best in a predictable environment and visual picture schedule that he can follow.

So, I go back to the ABC Functional Behavior form:

A=Antecedent (what happened before)? All the things listed above were building up inside him.

B=Behavior (Nick’s tired, confused, mad at the cold water and no pj’s, he lashes out.)

C=Consequence (After the meltdown, Nick de-escalates and apologizes and we go home.)

I’m still trying to figure out Nick’s world.  In retrospect, I should have increased his med dose before the dinner and made a visual schedule with pictures of their new home.  On the schedule put the following icons on:

“New house”

“Dinner”

“Dessert”

“All Done”

“Car”

“Home”

Or at the very least, just brought his pajamas.  So, I will re-boot and learn from this mistake just as I’ve done before.  Autism and meltdowns can be scary and brutal.  But they can also be prevented if you look ahead to the environment, and plan ahead for anything that might set your child off.

That’s what is in my noggin this week.

~Teresa

*CPI= “Crisis Prevention Institute offers trainings in “Nonviolent Crisis Intervention.”  The program is safe, nonharmful behavior management system designed to help humans service professionals provide the best possible care, welfare, safety and security of disruptive, assaultive and out-of control individuals even during their most violent moments”  For more Information: http://www.crisisprevention.com.

Posted in Autism, Behavior/ ABA, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Tech Stuff/Apps and Video Based Instruction

Blog #52~ Tech Time

geek pic

Blog #52~Tech Time

A few weeks ago at the National Association for Down Syndrome (NADS) Retreat the guest speaker did a presentation on using video based instruction and mobile technologies to support learners with Down syndrome and other developmental disabilities.  Toni Van Laarhoven, an associate professor in the Department of Special and Early Education at Northern Illinois University (NIU) gave us some great information on how to implement it.

Video modeling for can be used for teaching a variety of social, academic, and functional skills.  In the April 2012 archives, Blog #5~Ready, Set, Action, I wrote about how effective these have been in teaching Nick a variety of job skills.  He learned how to unload the dishwasher, load the washing machine and how to use the vacuum cleaner.

Nick vacumming_Tabor Hills (5)

Before video modeling we used social stories.  Basically this is like a script that you want the child to follow.  With Nick also having autism, it helps him to see it in picture form so he can better understand.  Nick has a thing for sneezing right in your face on purpose.  His teacher made this social story, here is part of it…….. aaaaachoooooo 🙂

photo (115)

These visual supports were effective, but his interest level when reading social stories was nothing compared to when he started watching the video models.

Here are a few ideas  I came up with for video modeling:

Teach a job skill

Teach a fine motor skill (cutting food, buttoning a shirt, pour milk, handwriting)

Teach a gross motor skill (swimming strokes, riding a bike, yoga positions.)

Grooming routines (brushing teeth, washing face, dressing.)

Bedtime routine

Change in routine (picture day at school, new curriculum unit in P.E., new school)

Visit to doctor, dentist, blood draws, and haircuts

Trip to the zoo, baseball game, mall, movie theater

Appropriate leisure activities to do at home (watch a movie, computer/X-Box)

Teach social skills (playing games with peers, turn taking)

It’s best to choose one behavior or skill to work on at a time.  Have the child watch the movie before engaging in the activity on a consistent basis.  For a job skill, many students have a video on their hand held device (iPod) and can follow the prompts as they work.  Ultimately, using video models can foster greater independence.

Shooting the videos can be done using an adult or peer model going through the sequence.  Simple verbal prompts should be provided.  For example, for pouring milk you can script it like this.

  1. Go to cabinet and get a cup.
  2. Go to the refrigerator and get milk.
  3. Open cap and pour milk in cup.
  4. Put cap on milk.
  5. Put milk container back in the refrigerator.

Another way to use video modeling is to make a video resume.  Toni made one of her sister who has significant disabilities.  This video showed in detail her routine.  The narrator pointed out specific details, likes, dislikes that added clarity to how she navigates her day.  This would be extremely helpful for a new staff, teacher, and direct care provider.  A few years ago, Toni’s NIU students put together a video resume of Nick called Project MY VOICE.  Like Toni’s sister, his showed what he did at school, his likes (music, community outings, etc..) and pointed out things that might upset him (saying “no” to him, changes in schedule, etc…)  Nick was very proud to show the video at his IEP meeting that year. 🙂

There tons of programs and apps that are available for assisting persons with special needs.  Here are just a few that have been recommended to me:

*Follow a schedule with Picture Scheduler:

picture schedule app

*iPrompts- Visual support, schedules, picture prompting for autism and special education.

*Artiks Pics-Vocabulary flashcards, memory games

*www.autismspeaks.org/autism-apps

*First Then Visual Schedule:

first then app

*ABA (Applied Behavior Analysis) and educational apps:

fruit app

happy sad app pic

Alphabet Tracing:

alphabet tracing

Sensory Fun, Light Box App:

light box app

Silly Fun, Talking Tom 2 (Nick’s going to love this one. Tom just cut one here, stinky) 🙂

talking tom

The list goes on and on, you get the idea.  There’s an app for just about everything.

Video based instruction, using mobile devices and prompting systems are effective tools in helping our kids navigate their world to become more independent. Put the power in their hands! That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome, Education and Special Needs

Blog # 24~Top 10 Things I Have Learned While Navigating Nick through School

Top 10 Things I Have Learned While Navigating Nick through School

This weekend I was prepping for a lecture called “A Parent Perspective” which I do at Aurora University.  For this semester there are two classes one undergrad and a graduate student class all who are/ or planning to become teachers.  Since Nick is a senior in high school I decided to include a top ten list of some things I have figured out over the years. While compiling this list I couldn’t help but think back to those early days. I was a novice and such a chicken when it came to IEP meetings.  I have a degree in teaching secondary education (Kinesiology and Health) but very little experience teaching special education.  I took a class similar to the one I am lecturing while at The University of Texas.  It gave a broad brush of special education and included an internship in a self- contained classroom and gym class. Beyond this I knew very little on how to take the helm and steer these uncharted waters.

Aurora University working with Elliott who leads the classes….

The early intervention program was easy (birth-three years old.)  The staff was nurturing and it was a *can of corn.  Once the cord was cut Nick entered the early childhood/ pre-school program things were more serious and the meetings took on a different tone.

Because Nick had very low muscle tone (a trait of Down syndrome see blog #7 Mama Mia, for more information on DS traits) he was delayed in gross motor activities.  He didn’t walk until age 3 ½ nor eat solid foods.  At age three during the transition from early intervention to early childhood/pre-school I enlisted a private speech therapist who specialized in feeding.  Amazing how one person can impact your life.  Pam opened up my eyes.  She got me thinking outside the box.  She also worked at a private school in Houston and suggested we look at putting Nick there.  The private school called The Arbor School had one opening three days a week.  It was an oasis, this all-inclusive resort with all of the speech, occupational and physical therapy right on campus working together.  They got their hands on Nick and worked magic. Nick attended The Arbor School three days a week and the public preschool program the other two days.  When the IEP came around at the public school, the whole Arbor School team came.   Our entourage sat down and matter of fact like made sure every attention to detail was addressed.  I was stunned.  What you can actually assert for yourself and get all kinds of services, equipment and therapy hours, I had no idea.

Nick at the Arbor School…..

The petting zoo came to the Arbor School during Go Texas Rodeo Week…

In California when Nick was in first grade I found my concerns of his need for a communication system going on deaf ears.  I brought in the Director of the Down Syndrome Connection support group.  The entire staff sat up straight as she advocated for my son.

Nick and I in Livermore, California…..

Much the same in middle school I enlisted the help from Little Friends Center for Autism.  I can’t say enough about the Arbor School, The Down Syndrome Connection and Little Friends.  What a gift they gave me as they showed me how to become an advocate for Nick.

So here is……….….The List!!!!!!

Top 10 Things I Have Learned While Navigating Nick through School

  1. Determine a method to communicate with the staff (communication notebook, email, daily reports.)
  2. Meet with the support teacher to discuss goals for the following year. Request all goals and reports from each department for review before the IEP meeting.
  3. Get everything down in writing in the IEP (from a 1:1 Aid to the chewy sensory toy.)
  4. I am not a bad parent because my child won’t keep gloves on/ or has a meltdown in school.
  5. Sometimes the parent has to be the one to rattle the cage.
  6. Get help when you need it (support groups, workshops, trainings, respite care, etc..)
  7. Know your rights, Read Wrightslaw.
  8. Don’t settle for just any solution if a problem
    doesn’t get better. There is always a better way.
  9. Sometimes as a parent you have to let go of your own dreams for your child so they can move down a different path.
  10. The parent is the biggest advocate for their child with special needs, trust in that.

Bringing support into IEP meeting does give a parent confidence.  But in most IEP’s my hand has been on the helm.  What I know for certain is that communication lines have to stay open.  I also learned to quit beating myself up because Nick had meltdowns (now we know that he was powerless because he couldn’t communicate his needs and it is not my bad parenting.)  Once the autism diagnosis was given, I had to reach out for help get more training and arm myself to fight the big fight.  I quit settling with the school staff and learned that I had to ask for more to help my son thrive. I wasn’t being a bitchy mom; I approached the problems in a matter of fact, but firm manner. And sometimes that means I have to be the one to rattle the cage to obtain services to support my son.  In addition, I found that just because I have a dream for Nick doesn’t mean he can fulfill it.  Facing the fork in the road that separated him from an academic curriculum to a functional curriculum enabled Nick to focus on what he was meant to do. Hello T, he just isn’t ever going to write his name, let go of that academic goal.

So here we are, Nick’s senior year and after riding some rough waves now the seas are relatively calm.  We survived and came out on the other side much wiser and stronger.  That’s what is in my noggin this week.  Until next week, I hope yours will be a *can of corn.

~Teresa

* According to Wiki Answers: The term “Can of Corn” is a phrase used to describe a softly hit baseball as it could easily be caught. The term originated as a customer would ask a grocery clerk for a can of corn the store clerk would grab a can from the top of a stack of cans, and would softly toss the can down to be caught without harm.