Posted in Down syndrome, Government/Legal Matters Related to Special Needs

Blog #89~ World Down Syndrome Day

Blog #89~ World Down Syndrome Day

The United Nations official recognition of World Down Syndrome Day is March 21st. “Each year the voice of people with Down’s syndrome and those who live and work with them join together to focus attention on what it means to have Down syndrome and how those with the condition play a vital role in communities across the world.”  Click on the site below to view events to raise public awareness to create a single global voice @www.worlddownsyndromeday.org.

WDSD Socks

According to Wikipedia, “Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.”

trisomy 21

The Secretary-General of the United Nations Ban Ki-moon said on 21 March 2012, “On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

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World Down syndrome Day.org gives this message on it’s website, “People with Down syndrome face many challenges as children and adults which may prevent them enjoying their basic human rights. Many people often fail to understand that people with Down syndrome are people first, who may require additional support, but should be recognised by society on an equal basis with others, without discrimination on the basis of disability.”

Big Guy, Nick 🙂

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My son Nick, is a young adult who has Down syndrome.  He has so much to offer and has brought so much joy to the world.  He’s made me a better person in the process.  If you would like more specific information on Down syndrome click here @https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

Please help me spread the word about World Down Syndrome this week on social media.  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…… 🙂

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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!

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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 🙂

Posted in Autism, Down syndrome, Education and Special Needs

Blog #87~Special Needs Parent Checklist for Visiting a New School

Blog #87~Special Needs Parent Checklist for Visiting a New School  

It’s almost spring…… that time of year when the scent of IEP’s are in the air.  IEP stands for Individualized Education Plan.

brace yourself IEP

The team as a whole looks at the student’s current level of functioning and together design goals and supports needed to provide appropriate education for the student.  The placement of a child with special needs should always be in the least restrictive environment possible.

Nick has Down syndrome and autism.  He uses a visual schedule to navigate through the school…….

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Parents with a child who has special needs can arrange to visit schools and see what the classroom environment looks like.   Here are some tips and helpful questions that should be asked on the tour.  I would suggest designating one notebook to take to any meetings and trainings related to your child with special needs.

My trusty, battered notebook……. 🙂

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Questions to ask on school visit: 

*What are the location, size and physical layout of the classroom(s)?

*How many students are in the classroom?  What is the ratio of students: adults?

*What instructional methods and materials will be used?

*How will the curriculum be modified for a student with special needs?

*What assistive technology is available?

*What behavior techniques and plans will be used?

*What does the school day look like?  (Ask for a printed schedule and to sit in on classes.)

*What kinds of inclusion opportunities do children in special education classrooms have to interact with general education students? 

Observation of class and school:   

*Watch the dynamics of the classroom.  How does the teacher interact with students?  Does the teacher individualize instruction? 

*What activities were children engaged? Would they be appropriate for your child?

*Do the classrooms and staff seem cheerful?

*Is student work displayed and is the classroom organized or would it be too distracting for your child?

*Are the curriculum, equipment, technology and educational supports up to date?

*How well are the facilities maintained? (Clean bathrooms, lighting, safe grounds, etc…)

*Is there a sensory room available in the classroom or school building? 

Once a school and classroom placement decision is made be sure and get pictures or do a video of the new setting for your child.  This social story should include the entry, locker, classrooms, lunch room, gym and any other relevant areas the child will be using in the school.  Review the social story or video several times before the first day of classes.

Here’s Nick visiting the middle school back in 6th grade. He was skeptical about this new environment as indicated by not wanting to remove his coat and keeping it zipped up to the top……..

Nick at Granger

As a parent of a child with special needs, remember that you know your child best.  You have the right to get in there and see what the classroom environment looks like in order to make an informed decision at your child’s IEP meeting.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Down syndrome, Fun Side of Nick

Blog #86~Down syndrome and Autism…Boy to Man

Blog #86~ Down syndrome and Autism… Boy to Man

I find it mind blowing that my son turned 20 years old.  What a strange dichotomy.  In many ways he is much like a child.  Nick still watches Thomas the Tank Engine DVD’s and plays with kiddy toys.  He needs prompts with grooming, dressing and navigating throughout the day.

nick and stuart little

He is small in stature, and at first glance you might mistake him for a middle school aged student.  But if you take a closer look, there are signs that he is indeed a young man.  His voice is deep and you can see the visible razor stubble on his chin.  That, and the fact that he likes to sneak a gulp of his Dad’s beer on occasion.  🙂

Bottoms up Nick……

nick drinking beer

At Nick’s conference last week, a poignant question was raised.  What are his barriers for increased independence?  For Nick it is his impulsiveness.  It’s that need to push buttons, in particular those big red buttons. He can never be left alone.

For those of you keeping score at home, the current count is 30 pulls since 3rd grade…….

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In the Down syndrome and autism support groups we all scratch our heads at the antics that our kids come up with.  The reoccurring theme is that impulsiveness.  It’s uncanny, the things they come up with to mess with us.  So often, our stories are similar.  Maybe it’s throwing a shoe out the bus window, coming in like a seagull and swiping something off your plate, opening up the car door while you are driving 50 miles an hour, stripping down buck naked, throwing an iPhone down the toilet, turning the TV volume up to 99, blowing a snot rocket and wiping on the flat screen  or pushing the microwave and phone intercom button repeatedly.

Or dumping an armful of hangers into the washing machine…

hangers in washing machine

Hardy har har Nick, good one!  There are a lot more pictures in Blog #3~Getting Your Goat, located in the April 2012 archives.

Within the framework of the “barrier question” above, it becomes increasingly obvious that these behaviors need to be controlled and contained.  Best case scenario, maybe Nick needs to express his funny side in a more appropriate fashion that is less invasive.  There is no way he could survive in a group home pulling such pranks.

We have two more years in the post-secondary transition program.  On the day of his 22nd birthday the little yellow bus will stop coming to the door.  So, the IEP goals for Nick need to be focused on global independence both in the community and at home.  It’s a bit daunting but then again, so was toilet training him. Somehow we survived that.  I look forward to the IEP next week and seeing how his program can be shaped to foster a more mature adult version of Nick.  That’s what is in my noggin this week!

~Teresa

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #85~ 10 Great Special Needs Resources

Blog #85~ 10 Great Special Needs Resources

Last week I targeted some links specific topics related to Down syndrome and autism.  I have a few more that relate to a variety of areas related to the special needs population.  You can click right on these links and check them out:

www.wrightslaw.com  Comprehensive information Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

www.woodbinehouse.com  Publishes book for parents, children, teachers and professionals related to special needs.

www.specialreads.com Special Reads for Special Needs Publishing was founded by Natalie Hale in 2000 to answer a need for effective, entertaining reading materials for learners with Down syndrome, Autism, and other developmental delays.

www.hopefulparents.org  Grassroot support for parents of kids with all types of special needs.

www.supportforspecialneeds.com  A community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know.

www.leslie4kids.wordpress.com   Comprehensive information on Childhood Apraxia and Speech, parenting and child development.

www.specialsparkle.com   Beautiful jewelry designed and made by a 21 year old young lady who has Down syndrome.

www.downsdesings.com Downs Designs provides a stylish clothing line with proper fitting for unique body types associated with having Down syndrome which is easy to get on and off.

www.hammertravel.org  Offers a variety of travel opportunities for individuals with developmental disabilities

www.nickspecialneeds.wordpress.com   This site which provides information on a variety of special needs topics.  Much of the information specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

Hope you find these additional resources for special needs helpful. That’s what is in my noggin this week. More about Nick’s world next Monday, stay tuned…….

~Teresa 🙂

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #84~ Resource Links Related to Down syndrome and Autism

Blog #84~ Resource Links Related to Down syndrome and Autism

Today is President’s Day, so there is no school.  My ability to focus and write is hindered by interruptions from Nick who is making loud mooing noises, pushing the fan button on the microwave, dropping things behind the TV and watching “The Other Guys” while tapping a can of tennis balls against his mouth.  Yes, that’s a slice of  Down syndrome and autism here this morning………

Nick tennis balls

So this week I’ve included my favorite resource links related to Down syndrome and autism:

Down syndrome links:

DSAwarenessMagnet

www.ndss.org  The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

www.ndsccenter.org  The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

www.nads.org   NADS is the National Association for Down syndrome and a solid support group in the Chicago area.  There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome). 

www.gigiplayhouse.org   Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

www.noahsdad.com   This site is invaluable for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused.  It is one of my favorite websites.

www.futureofdowns.com   Run by parents of children with Down’s syndrome.  Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism Links:

autism ribbon

www.facebook.com/autismdiscussionpage  This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This is one of my favorite links related to autism.

www.autismspeaks.org  Autism Speaks provides information and advocacy and good general information and links.

www.autism-society.org  The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

www.tacanow.org  Talk About Curing Autism and has a ton of links and articles along with coffee groups.

www.brianraymondking.com  Brian King teaches his proven methods to individuals and their parents across the country in a private one-on-one format using the latest technology. He  writes a variety of articles, is an author, speaker and trainer  for schools, parents and support groups.

www.bridges4kids.org  Great resources for special needs families. One of my favorite go to sites.

www.myautismteam.com Parents share daily trials, triumphs, questions and recommendations

www.mayer-johnson.com  Boardmaker software for assistive technology/AAC devices

www.teeach.com  Information on TEEACH materials

www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

www.easterseals.com Easter Seals offers programs, training and equipment for families.

www.specialedadvocacy.org  Advocacy site for parents and teachers

Down syndrome and autism links:

down syndrome and autism intersect

www.nickspecialneeds.com My site which provides information on topics specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

www.ds-asd-connection.org  Offers good information related to a dual diagnosis of Down syndrome and autism.

www.theupsideofdowns.org  Provides support, advocacy and information specific to Down syndrome and autism.

In addition, let me add that there are several Facebook groups directly related to Down syndrome and autism.  These groups are a safe place to share information, ask questions, and share the crazy things that our kids with a dual diagnosis do.  No one in these FB groups would  bat an eye if you posted a picture like this……… (In fact they would hit the like button and add in their own pictures in)…….

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There is help out there right at your finger tips.  Let me know if you have any more to add in.  Thank you for reading and sharing my blog. Now, it’s time to gather up the contents of my purse that Nick decided to dump all over the living room floor.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick

Update~Nick Turns 20

Update~Nick Turns 20

I can’t believe that Nick turned 20 years old last Friday.  It seems like just yesterday that he came into this world.

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Nick enjoyed his favorite meal that evening, a big bowl of pasta!

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He had a blast at school with a birthday dance party earlier that day.  He loved opening his presents.  Big guy is convinced that all greeting cards make noise now.  Here he is stimming away to the card his Aunt Laura and Uncle Scott sent him.

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Last night we went out to dinner with the family.  Guess what Nick had to eat?  That’s right, another big bowl of pasta.  We topped off the evening with a decadent triple chocolate cake!  After a evening of gluttony, we settled in to watch The Beatles special.

Beatles birthday

I have a lot of thoughts floating around in my noggin about the last 20 years, and raising a child with Down syndrome and autism.  It’s a mixed bag of emotions~joy, triumph, gratitude, and amusement tossed with fear, sadness, frustration and anger.  I’m going reflect for a bit and share at a later date.  For now, I will try to get use to the idea that Nick is not a child anymore.  Not an easy task given his childish ways.  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #83~Sensory Anchors

Blog #83~Sensory Anchors

Nick doesn’t play with toys like most kids do. Having Down syndrome and autism has changed the playing field for him.  He tends to use many of them to seek out some sensory benefit.  For instance, he likes to mound his toys up in one spot…..

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Even more fun was piling them on our cat……

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The other day he was stacking random objects here and there around the house.

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Why do kids with autism, Down syndrome and other sensory related issues  play with objects in such different ways?

sensory anchor one

There are many sensory issues associated with having autism.  Their world may get too bombarded with stimulus or feel unpredictable and overwhelming.  Finding a way to stay grounded becomes even more of a need when the senses are flooded with too much stimuli.  Often a child with sensory issues seeks out comfort in the form of a “sensory anchor” which helps them calm down.  These sensory anchors can be a repetitive activity that provides comfort and is soothing for them

Here are some examples of sensory anchors: 

*Lining up toys

*Spinning objects

*Following a line with their eyes

*Sitting in bean bag chair or swinging

*Looking at reflective objects

*Hand flapping

*Rocking back and forth

*Rubbing hands together

*Chewing on sleeves or collar of shirts and other non-food objects

*Smelling things

*Making repetitive sounds with mouth

How many of you have been out in public and notice a person with autism making odd sounds, rocking, or maybe banging on something loudly. These are ways in which they are  trying to cope in the world by using sensory anchors.  Nick’s include a variety of activities. He often chews on his sleeves and collar of his shirt.  Other times he is rocking, hand flapping, and tapping or making sounds with his mouth (that by the way sounds like a cow mooing)  🙂 

Nick’s first choice and all-time favorite is tapping a can of tennis balls against his mouth!

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Second choice, doing heavy work vacuuming!

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I realize that some of these are not acceptable in public, so I try to find alternatives for such occasions. For instance, I will provide deep pressure in the form of hugging to help calm him down.  But around the house and in the car, I have to respect his need to do this to help him self-regulate.   After all, everyone has some way of doing this whether it’s nail biting, twisting your hair, chewing on a pen, sitting while one leg is fidgeting to stay alert.  We all find our own way to decompress after a hectic day, right?  What’s your sensory anchor?  Music, meditation, exercise, hit the hunting or driving range, X-Box, a bubble bath or glass of wine?

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Bottom line, it’s important to provide opportunities for a child with autism and sensory integration issues to get grounded and centered.  So if it’s a can of tennis balls, then so be it!  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome

Blog #81~Dreams for the New Year

Blog #81~Dreams for the New Year

This year I decided on just one resolution.  I am going to require more of my self.  Oh wait one more……Keep the bird feeders filled up!  As I wrote in Blog #79~Reboot 2014, I have a need to start fresh.  It’s time to move past the “stuff called life” that got in the way in 2013.

I have to stop making excuses like “I’m too busy to work on my goals and dreams”.  So, in all areas of my life I am requiring more of myself.  This includes at home, work, writing, personal ambitions and what I expect from Nick (my 19 year old son who has Down syndrome and autism). A good friend of mine gave me a plaque for Christmas which I keep near my laptop.  It says this:

“Believe you can, and you’re halfway there.” ~Theodore Roosevelt

I’ve cracked my knuckles; gotten things organized around the house, and feel ready to take on 2014.  How about you?  What are your dreams for this year?  What is going to keep you on track?  For me visual cues help, much like the icons that Nick uses to navigate his day……..

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My new plaque is a nice reminder to stay on track.  All around the house I’ve sprinkled trinkets around for inspiration…….

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I know exactly what my sister Laura, is thinking right now.  There she goes again, deep thoughts by T!

Nick with his Aunt Laura and Uncle Scott…..

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Yes I have a reputation in my family of getting a bit reflective. 🙂

daily affirmation 1     daily affirmation 2

Back to Nick’s world,  just what can I do to require more from him?  I was thumbing through some files in my organization frenzy recently.  I stumbled on a one called “Basic Functional Life Skills Curriculum.  I scrolled the list and noted that there many benchmarks he hasn’t met.  He still needs help to become more independent in the areas of grooming, dressing, chores, leisure, etc…..

Yes, he’s rocking my high heels while unloading the dishwasher……

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I have to remind myself to slow down. I need to let Nick try more of these things on his own with less guidance from me.  Take some advice from the guru:

ann landers

Having a child with Down syndrome and autism means a reliance on a caregiver at all times. I have come to accept this fact, but I am never giving up.

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I’m going to require more from myself to help Nick become the best he can be!  How about you, what are your dreams for 2014?   That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Tech Stuff/Apps and Video Based Instruction

Blog #80~Getting Organized Along With My Autistic Child

Blog #80~ Getting Organized Along With My Autistic Child

Is it odd that I like to have all the labels turned straight in the food pantry and the towels stacked perfectly in the bathroom closet?  My hangers might just be color-coded (white=shirts, gray=pants, teal=capri length pants).  I wasn’t always so compulsive. 

I’ve touched on my theory about this in previous blog posts. Simply this, I need to feel in control in my home and creating order helps keep me grounded.  Having a child with Down syndrome and autism under your roof is not exactly a “Zen” environment.  Nick’s world can be chaotic.  Just go back to the April 2012 archives and read Blog #3~Getting your Goat for a little taste of crazy. 🙂

This is just one of many things Nick has dumped on the floor…..

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So over the weekend, I got on a roll. Operation Re-boot 2014 inspired me to get organized.  First stop= Clean out the paper pile and mail that accumulated over the holidays and made my “to do list” for the week.  Next, Put away the Christmas gifts and stuff from the Florida trip that I stashed in the dining room…….

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I opened the medicine cabinet to put the cold meds back (that had been sitting in the dining room for over a week).  Suddenly, an avalanche of allergy boxes spilled out and bonked me on the head.  Guess what the next stop was?

Wow, it’s been a long time since the medicine cabinet was cleaned out!  Nice expiration date…. 11/06 on the Tylenol bottle…..What the? 

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Voila, purged, organized and labeled!

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Next stop= The island of misfit socks. Maybe some will reunite with their mate…..

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Last stop= Clean out the fridge

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After a long day in full steam OCD mode, I felt lighter and more in control of my living space.  The chi energy was once again flowing freely~~~~~~~~ aaahhhh!

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Getting organized helps us to better plan daily activities and use our time more effectively.  It’s not easy for some people with Autism Spectrum Disorder (ASD).  The nervous system is not always in sync which makes things difficult to process sensory information.  This can lead to feelings of disorganization, agitation and being overwhelmed. According to the National Autistic Society, “Challenges are found in processing information, predicting consequences of an action, understanding the concept of time and executive function (focus on details instead of the whole picture).”

Most of us use certain strategies to help organize our day.  I use an old school calendar that is color-coded in the kitchen.  At a glance events are highlighted and easier to spot. Teaching fitness classes=green, appointments=pink, birthdays=orange, vacations=purple, etc…  Color coding and other strategies can also be equally as effective for people with an autism spectrum disorder (ASD). Here are some practical ways to teach and implement organization:

Visual supports

Social Stories give a blueprint for what is expected for behavior, what is on schedule and changes in routines.

Pictures (Picture Exchange System called PECS)

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Note Nick’s room has pictures labeled on his dresser to help him find and put away his own clothes.  Teaching organizational skills to persons with autism fosters independence…

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Lists

Written or visual with pictures keep persons on task and also registers achievements.

Electronic Devices

Phone and iPod apps are available to make schedules, set alarms and timers and act as general reminders.  See Blog #52~Tech Time located in the April 2013 archives for specific suggestions. Here’s one…….

picture schedule app

Task boxes, envelopes and files

Store media devices, work bins and personal items in set places helps to teach responsibility.  Nick’s area includes his PECS Communication book, media storage box and theSTOP Box (which I hand him when it is time to surrender an item and transition).

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Nick’s work bins that he can retrieve and navigate independently….

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Getting things organized helps all of us feel more in control and makes for a more efficient use of our time.  Putting strategies in place to help persons having autism spectrum disorder can make a huge difference.  Their world becomes easier to navigate, which in turn lessons anxiety.  It’s all about staying in the Zen zone.  That’s what is in my noggin this week.

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~Teresa