Two pieces of advice have been essential in my son Jacob’s progress to become as independent as possible. The first came from Steven E. Lindauer, PhD, the director of the Pediatric Developmental Disabilities Clinic at the Kennedy Krieger Institute: “Expect the same thing from both of your children. [Mackie has another child who’s neurotypical.] Even though Jacob has autism, children with autism do grow up and will become adults.”
The second piece of advice came from Gary S. Allison, MEd, EdD, assistant professor of special education at the University of Delaware’s School of Education: “Always be planning for five, ten years down the road. If you are teaching a skill when it’s needed, you are late.”
These pieces of advice have been directing Jacob’s roadmap to independence. He may never be able to live by himself, but he can still be independent.
My husband and I started teaching Jacob how to do chores that had clear endings, such as feeding the pets, putting seed and peanuts out for the birds and squirrels, folding towels, taking out the trash, and plugging in his AAC (augmentative and alternative communication) device. Since then, we have learned that what we teach needs to motivate Jacob, be functional, and produce immediate results. Jacob also needs to be able to relate to it. Most importantly, what we teach has to be useful in his adult life and make him less dependent on other adults.
Our first step was to find motivators besides motion and sensory activities, electronic games, the computer, TV, and food, because these could not deliver the reinforcement needed to impact Jacob. This issue plus Jacob’s lack of communication skills steered us to the Picture Exchange Communication System (PECS) and Pyramid’s token economy system. These tools not only motivated Jacob but also gave him a sense of control during intense learning sessions.
At his ABA (applied behavior analysis) sessions, Jacob was taught how to use a wall schedule to organize his day. This tool gave him receptive language, which is the ability to understand information.
Over the years, Jacob’s wall schedule has decreased in size to a portable three-inch binder. His revision of Pyramid’s token economy system has also evolved and is now used in combination with his portable binder to schedule every part of his life. We have relied on this system to teach basic skills (such as what a bathroom is and what we do in it). And it guides and reinforces Jacob as he completes his daily living skills and household responsibilities and enjoys leisure activities. We expect this tool to eventually become Jacob’s daily planner in which he will independently create, manipulate, and plan his own activities.
When first tackling household chores, we took baby steps. First, we chose a task that everyone shared equally, such as clearing the table after dinner. Everyone also collaborates in cleaning the kitchen, so our family modeled this behavior for Jacob. Each step of the task was represented by an icon on his portable schedule; each completed task earned a token.
Teaching a new skill begins with creating specific icons for each step of the task and then guiding Jacob through each step. As Jacob learns the skill, we replace the specific task icons with a generalized icon.
We slowly expanded his workload by combining activities for one icon while adding other responsibilities to the schedule. This step created greater expectation for each icon. Initially, each schedule was used to complete one task, but as Jacob learned the new task, each step was strung together with the next. Eventually, the task was condensed into one icon on a schedule.
For example, Jacob’s first morning schedule consisted of five tasks—brush teeth, shave, shower, brush hair, and get dressed—followed by a 10-minute break to reinforce the positive behavior. His morning routine also contained other responsibilities. At first, we had to create three separate schedules to complete all of Jacob’s morning tasks. As a result, Jacob’s morning routine took 1 1/2 hours. But over time, my son’s morning routine condensed into only 45 minutes. Jacob now completes 15 tasks, which are represented on his one schedule as “bathroom, bedroom, medicine, animal, and breakfast.”
In the future, my husband and I want Jacob to learn abstract concepts, such as time management and self-determination, but first, he needs to learn how he can impact his world and what his capabilities are as well as discover his choices for himself.
My husband and I believe that these goals are achievable through household chores because they help Jacob take care of his belongings and his environment.
Today, Jacob is learning to plan his own day by operating his portable schedule himself. To this end, we place two icons on his portable schedule. Each icon represents a task he must complete and may include current goals, new skills, or tasks that must be accomplished in a timely manner, such as getting to a doctor’s appointment on time.
We also give Jacob a choice of what else he would like to add to his schedule. He chooses from his lists of chores and leisure activities. This process allows him more control over his day and begins to teach him time management. Both pieces are necessary for developing self-determination.
Sun contributor Karen Mackie is a parent with a child on the autism spectrum and long-time autism advocate.
This text was edited for consistency of language and message and appears in the autumn 2018 issue of the Autism Delaware™ quarterly newsletter, The Sun.
Check regularly for updates!
UCPDE/Camp Manito Winter Holiday Respite Program
Activities include cooking, arts & crafts, games, and music!
December 24, 26, 27, 28, & 31
For ages 3-21 with a disability, and 5-13 without a disability
Cost: $200 for all 5 days or $50 per day
For more information, call Julie at (302) 764-2400 https://ucpde.org/event/winter-holiday-respite-camp-manito/
Contact your DDDS representative for respite funding!
DART, Elderly Disabled Transit Advisory Committee (EDTAC)
The EDTAC is comprised of riders, advocates, and representatives from agencies who work together to improve service for the aging and disability communities. DART staff fully support the work of the committee at their meetings.
The working group meets regularly to discuss and advise DART with concerns impacting individuals with disabilities that are utilizing DART Paratransit services, as well as Fixed Route Bus services. Topics of discussion include: on time performance, route changes, accessibility, travel training, communication with riders, eligibility, reservations, and training.
EDTAC meetings are held every other month from 1:00pm – 3:00pm in DART’s Dover and Wilmington offices.
For 2019 meeting dates or more information, contact:
Belinda Strickland, ADA Compliance Specialist
(302) 760-2827 or firstname.lastname@example.org
Special Education for the Amicable Resolution of Conflict (SPARC)
Free resolution services for Delaware families and schools in conflict!
Since 1996, the Conflict Resolution Program at the University of Delaware has partnered with the Delaware Department of Education to provide free, confidential dispute resolution services to families and schools across the state.
The Special Education Partnership for the Amicable Resolution of Conflict (SPARC) is the statewide special education dispute resolution program serving families and schools in Delaware. When families and schools disagree, SPARC services may be able to help with one of two services:
• Special education mediation, where a trained mediator assists the parties to resolve specific conflicts regarding a student’s education.
• IEP meeting facilitation, in which a trained facilitator assists the IEP team in working together to develop an IEP for the student.
Services are free, confidential, and voluntary, and are built on respect and self-determination. They can be requested by either families or schools who feel they have reached an impasse on a special education related issue.
Below is a link to informational brochures in both English and Spanish, and we encourage you to pass this information along to others who may benefit from these free services.
To request free printed brochures, please email Jessica Velez at email@example.com or by phone at 302-831-0939.
English SPARC Brochure: https://www.sppa.udel.edu/ipa/content-sub-site/Documents/SPARC-Brochure.pdf
Spanish SPARC Brochure: https://www.sppa.udel.edu/ipa/content-sub-site/Documents/SPARC-Brochure-Spanish.pdf
For more information about these programs and services, please www.sppa.udel.edu/ipa/serving-delaware/crp/sparc or call 302-831-8158.
Easterseals Announces New Lifespan Respite Grant Funding
Caregiver burnout puts your physical and mental health at risk. Respite allows you the time to relax, clear your mind, and find some peace in your busy life. Through Easterseals respite programs, partially funded by the Division of Services for Aging and Adults with Physical Disabilities, you could qualify for grant funding to pay for care of your loved ones while you get a break.
New applications for Lifespan Respite funding are being accepted. Please click here http://www.tinyurl.com/ESRespiteApp to complete an online application, or call the Community Outreach Department at (302) 221-2087 or 302-221-2076 to complete over the phone.
Tele-TOTS (Treatment On Time) now available!
Nemours/A.I. duPont is currently recruiting families statewide for a pilot clinic. This new opportunity for children with ASD and their families will provide family-focused behavioral interventions including aggression, tantrums, compliance, self-help skills, toileting and sleep concerns.
Interested families should contact Nemours/A.I. duPont Pediatric Psychologist, Dr. Colleen Sherman at (302) 651-4515 or Colleen.Sherman@nemours.org
Adaptive Art Classes at The Art Studio
Did you know that the New Castle County Art Studio and Art Therapy Express partner to provide adaptive and inclusive art opportunities for the community? Whether you would like to drop in to the Open Studio and meet new friends or schedule a workshop for a group, we have opportunities for you!
For more information email firstname.lastname@example.org or call (302) 995-7661,
Click here to visit the website: http://r20.rs6.net/tn.jsp?f=001F0LECvJhAt_WlJgP9O6fsgJQBjHFVRbRRuRob_vR1TdPyla4bVfBSTlvzRXTmcBk-X87a-MthNze_fwBObyPBu3Q0Qiu5Kzy-hDzNQQC7fooiliQPOpBw1c3X0P9eQJCiR9Of9ZbmLoaA3X2jhUgqnSqS4G3uitX7PcfIngzo7JgqnGwH_Ktkq0PMeQmUa52&c=57GEFTmydsRsUW2oVoPUGzrTtDYlwOJ3P6SCw6lLuLJmwb1CMfn-eQ==&ch=gbsZwCcGgCRyHQHIcHleqOpgw6ClNJZcTyYQLjjk6FJa2VmtHN86xw==
Sensory Sundays and Meditation Mornings at Yogibo
SENSORY SUNDAYS is held on the first Sunday of every month from 10:00 – 11:00 AM at Yogibo Christiana. Come out for a no obligation Yogibo product demonstration. The store is closed to the public and lights are dimmed, music is low, and some light refreshments are served. For questions or to sign up, call the store at (302) 318-8551 or email email@example.com
MEDITATION MORNINGS is held on third Sunday of every month from 10:00 – 11:00. Come out to relax with soft meditation music, sip hot tea, and enjoy quiet. This is an hour long moment for you to enjoy before you start your day. This is for ADULTS ONLY hour. For questions call Carrie or Caitlin at (302) 318-8551 or email firstname.lastname@example.org
Check out their website for information on more sensory integration uses for aYogibo! https://www.yogibo.com/sensory_soothing/
Adult Social Groups
Expanding Options (ExpO)
Join their mailing list for updates on upcoming statewide adult social events like:
• A nature walk and picnic
• Monthly bowling
• Photo safari lunch and pool at Slate
Contact Jane Miller at email@example.com to be added to the mailing list and for information.
Visit Asperger’s Alliance website for updates on upcoming social events and support groups. http://www.aspergersalliance.org/calendar
Contact Becky Clark for more information: Becky@aspergersalliance.org
Sensory Friendly Movies and Live Theater
Regal People’s Plaza
1100 Peoples Plaza, Newark DE 19702
1-844-462-7342 ext. 173
https://www.regmovies.com/promotions/my-way-matinee for upcoming sensory friendly show times
818 N. Market Street Wilmington, DE 19801
Now offers Sensory Friendly Family Programming for children and adults! Tickets are $15 each, or save $3 when you buy three shows. They offer smaller crowds, relaxed attitude to noise and moving around during the show, noise cancelling headphones are available, tablets and other electronic devices are permitted with the use of headphones, sound is lower with no sudden, loud sounds, quite space and a downloadable social story is available. Visit https://www.thegrandwilmington.org/sensory-friendly
Upcoming shows in Copeland Hall
• The Rainbow Fish December 16 at 3PM
• Jeff Boyer’s Big Bubble Bonanza March 31 at 3PM
• Magic Tree House: Showtime with Shakespeare May 19 at 3PM
Delaware Theater Company
200 Water Street Wilmington, Delaware 19801
Relaxed Performances offer reduced startling lighting and sounds, relaxed rules on talking and moving around during the show. Visit https://www.delawaretheatre.org/relaxed-performances for more information and upcoming shows.
TDF Autism Friendly Performances
Keep an eye out for tickets for these upcoming shows!
• ALADDIN – Sunday, March 3, 2019 at 1pm at The New Amsterdam Theatre
• Lerner and Loewe’s MY FAIR LADY – Sunday, May 5, 2019 at 1pm at The Vivian Beaumont Theater
For more information on autism friendly shows with TDF, https://www.tdf.org/press/346/TDF-announces-2018-19-season-of-autism-friendly-performances-on-Broadway
Sky Zone Trampoline Park
Sensory friendly jumping has returned!
First Monday of every month
5:00pm – 7:00pm
Admission $11 for one hour, or $15 for two hours
Research Study at University of Delaware
Are you looking for something for your youngsters to do? They can have fun and contribute to research at the same time!
University of Delaware’s Move to Learn Lab is still recruiting adults for the UD AutismLab fNIRS Study through 2021.
You are invited to participate in a study that examines brain activity when performing everyday skills in infants, children, adolescents, and adults with and without Autism Spectrum Disorder (ASD).
Please email the study Principal Investigator, Dr. Bhat at: firstname.lastname@example.org (preferred) or call the Move to Learn – Autism Lab at 1-302-831-7608.
For more information, please visit https://sites.udel.edu/pt/research/anjana-bhat-ms-pt-phd/
Independent Resources, Inc. “Snak & Chat”
2nd Tuesday of Every Month 11:00 AM – 1:00 PM at
Independent Resources, Inc.
154 S Governor’s Ave, Dover
Parent/Caregiver Support Group
Support group for Parents/caregivers who have a family member with ASD.
Last Saturday of every month
Greenwood Public library 100 Mill St, Greenwood, DE 19950
To register, contact
Donna Carter at 302-349-5309 or email@example.com
Check out this recap of resources in our social media posts from October 2018 for National Bullying Awareness Month!
How to make a difference
October is National Bullying Prevention Month!
There are many ways you can help reduce bullying. Check out this resource from PACER for some ideas on what you can do to make a difference!
Be kind, take the pledge
Be supportive of others who have been bullied, be kind to others, accept other people’s differences, include those who are left out.
Click here to take the pledge!
Delaware’s Bullying Prevention Law
Are you aware of Delaware’s school bullying prevention law? Did you know Delaware offers a bullying hotline?
Check out this website for resources on how to get help if you or a loved one is affected by bullying
How you can help
For National Bullying Prevention Month, we want to know, what do YOU do to stop the bullying?
Check out what these people did, and tell us in the comments what you can do to help.
Bullying doesn’t stop when people leave high school. It happens at work too.
The Workplace Bullying Institute (WPI) has been working for 20 years “to research and understand, to educate the public and to teach prevention and correction of abusive conduct at work.”
Here’s how WPI defines workplace bullying:
“Workplace Bullying is repeated, health-harming mistreatment of one or more persons (the targets) by one or more perpetrators. It is abusive conduct that is:
• Threatening, humiliating, or intimidating, or
• Work interference — sabotage — which prevents work from getting done, or
• Verbal abuse
This definition was used in the 2014 WBI U.S. Workplace Bullying Survey. Its national prevalence was assessed.”
If you are being bullied at work, here are some tips to help you overcome it.
Bullying and Disabilities
According to PACER, statistics show that students with disabilities are more likely to be bullied. Their website provides a wealth of information to help. Learn about rights and policies, self-advocacy, peer advocacy, person first language, activities, and more.