17 Organizations Every Parent of a Child With Autism Should Know

April Autism Awareness MonthAs we enter the second week of Autism Awareness Month, it important for families of children with
Autism to know that you are not alone. You have options. There are organizations and people working around the clock to understand and navigate Autism Spectrum Disorder.   So this week,  FRCD is bringing you 17 Organizations that every Illinois parent raising a child with Autism Spectrum Disorder  should know about.

1 .Advocate Illinois Masonic Medical Center/The Autism Treatment Program

Advocate Illinois Masonic Medical Center/The Autism Treatment ProgramOur program for children with autism stresses early diagnosis, intensive treatment, and support for parents and caregivers. Utilizing our approach, children with autism face a better prognosis than ever before. http://www.advocatehealth.com/immc/theautismtreatmentprogram

2. AUTISM SOCIETY OF ILLINOIS

Autism Society of Illinois

Autism Society of Illinois provides education, training, individual assistance and practical support for parents and increases public awareness of autism, and offers a referral network of professionals. 2200 S. Main Street, Suite 205 Lombard, IL 60148 Tele: (630) 691-1270 Contact: Mary Kay Betz email:info@autismillinois.org  WEBSITE:  http://www.autismillinois.org.

3. Autism Speaks

Autism Speaks Logo

Autism Speaks is a leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. http://www.autismspeaks.org/  Please email Chicago@AutismSpeaks.org or call 224-567-8573 at any time to connect to your Autism Speaks Chicagoland Chapter staff person.

4.The Autism Resource Center at Rush University Medical Center

Rush University Medical Center

The Autism Resource Center at Rush University Medical Center provides referrals for families who have a child with an autism spectrum disorder. The Autism Resource Center’s team has developed an online resource guide to help families find referrals in the following counties: Lake, McHenry, Kane, DuPage, Cook, Kendall, Will, Grundy and Kankakee.  http://www.rush.edu/rumc/page-1213718660256.html

5.The Autism Program of Illinois

The Autism Program of Illinois LogoThe Hope Institute for Children and Families lead the development of The Autism Program of Illinois (TAP), to provide services and supports for the increasing number of children and their families. Through a service network of community agencies and university partners, TAP offers local programs and services based upon best practice standards and current research.  http://www.theautismprogram.org/

6.BoardmakerShare

Boardmaker logoBoardmakerShare is the perfect community for finding thousands of Boardmaker activities on hundreds of topics. Now, the redesigned BoardmakerShare makes it easier than ever to share Boardmaker activities, and find the groups who are using them along with you.  https://www.boardmakerachieve.com/default.aspx

7. CHICAGOLAND AUTISM CONNECTION

CHICAGOLAND AUTISM CONNECTION

 CAC holds monthly parent meetings, and numerous activities to increase awareness for children and adults with autism. 1803 West 95th Street, #268 Chicago, IL 60643 Contact:  Paul Eric Butler Tele:  (773) 329-0375 EMAIL:  info@chicagoautism.org WEBSITE: http://www.chicagoautism.org

8. Child & Family Connections (CFC) Office Locator

Department of Human Services IllinoisSearch for a DHS Office or Service Provider by selecting your county, and, for Cook County, your ZIP Code. Early Intervention eligibility services are conducted through your local CFC office. http://www.dhs.state.il.us/page.aspx?module=12&officetype=4&county=

9. Easter Seals’s Therapeutic School and Center for Autism Research

Easter Seals's Logo

The new center allows Easter Seals to expand its landmark autism program and custom design a facility to meet the special needs of students with autism, emotional behavior disorders and severe learning disabilities.  Interior plans and features from special acoustic finishes and lighting fixtures to therapy and gross motor skills rooms help reduce distractions and promote more effective learning. Therapeutic School and Center for Autism Research, 1939 West 13th Street, Suite 300 Chicago, IL   60608-1226. 312-491-4110 Main Phone  312-733-0247 Main Fax

http://www.easterseals.com/our-programs/autism-services/

10. Family Resource Center on Disabilities

Family Resource Center on DisabilitiesLearn about your Rights and Responsibilities under the Individuals with Disabilities Education Act (IDEA) Make informed decisions about your child’s Individualized Education Program (IEP) Learn more about Early Intervention and transition services. www.frcd.org

11. Interactive Autism Network

IAN LogoIAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute. IAN’s goal is to facilitate research that will lead to advancements in understanding and treating autism spectrum disorders (ASDs). To accomplish this goal, we created the IAN Community and IAN Research.  http://www.iancommunity.org/cs/about_ian

12. Organization for Autism Research

Organizations for Autism Research

 Led by these parents and grandparents of children and adults on the autism spectrum, OAR set out to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily. http://www.researchautism.org/about/index3.asp

13. Exercise Connection

Excercise Connection LogoThe Five Components is a systematic approach to educating and designing exercise programs for children, schools and anyone involved in lives of children with autism spectrum disorders.  These components have similarities to the current physical education components, but, emphasize quality of movement, not quantity. They focus on the human body in its natural form while giving parents, educators and physicians exercises that are not only developmentally appropriate but cost effective. Contact David 7 at (773)575-5100 ,  Email: david@eautism.com 1871 N. Clybourn Ave. Chicago, IL 60614  http://www.ecautism.com/

14. Continuum Autism Spectrum Alliance

Photo for Continuum Autism Spectrum Alliance. Autism Spectrum Disorder.

Continuum Autism Spectrum Alliance addresses the needs of those who present with signs or symptoms associated with Autism Spectrum Disorder and related developmental disabilities, and we’re unique in our ability to provide a seamless continuum of care starting with diagnosis and extending through assessment and treatment. 3501 Algonquin Road Suite 210, Rolling Meadows, Il 60008 http://autismspectrumalliance.com/

15. RCADD Services

UIC LogoThe Resource Center for Autism & Developmental Delays (RCADD) was established in partnership with the Chicago Department of Family & Support Services, and The Autism Program in Illinois (TAP). This initiative was developed to share resources, referral information, and training for families and educators of children with Autism and/or Developmental Delays. https://cfl.uic.edu/programs/resource-center-for-autism-and-developmental-delays/rcadd-services/

16. StarNet

Starnet LogoWe provide a variety of opportunities for personal and professional growth for those who touch the lives of young children, age’s birth through eight, with an emphasis on the preschool years and children with special needs.  http://www.starnetchicago.org/

17. TASH

TASH LogoTASH works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates. The inclusive practices TASH validates through research have been shown to improve outcomes for all people. www.tash.org

 

7 Tips for Parents of Children with Disabilities Braving the Cold

 

Snow Truck Plowing Snow

Snow Truck Plowing Snow

As we approach dangerously cold winter conditions, it is important to prepare and utilize our best options.  If you can avoid leaving your home, please do so.  This is probably the best option, but  it is an option that is not available to a lot of us.   We have to earn livings outside of our home, our children’s schools are open, or our living conditions may not be safe enough for us to remain in.

While venturing out into unforgiving cold effects both people with or without  disabilities. People with disabilities and parents/caregivers of people with disabilities face significant challenges.  Below are immediate actions you can take to prepare for the cold.

  1. Wear multiple layers of clothing, including a scarf around your neck, a winter hat, lined boots and two pairs of socks. Parents:pack extra changes of warm clothes in your children’s back packs.
  2. If your child is able to carry a cell phone, do so.  If not, make sure they have your contact information where you can be reached on their person.
  3. If you or your child utilizes a wheelchair, wrap a small blanket around your legs, tucking it underneath yourself or around your sides when traveling. This will help to maintain body heat. Wheelchair users may consider purchasing pneumatic tires for better traction. Another alternative for some circumstances is to use standard dirt bicycle tires.
  4. Use table salt or clay cat litter to clear ramps – rock salt can poison working assistance animals and also may be slippery.
  5. Remove the tires from your wheelchair and shake debris and ice off them before placing them in your vehicle. Wipe down any metal surfaces (wheelchair tire rims, walkers, etc.) as soon as possible after returning home. This will prevent rusting.
  6. In these frigid temperatures, it is important to stay hydrated.
  7. Dogs can suffer from hypothermia and frostbite, too. Whether you use a working assistance dog or are taking a pet outdoors, consider a dog coat and boots for your dog’s paws. Also, keep a blanket in your vehicle for your dog.

Things to Consider:

  • Using a wheelchair in snow can be strenuous, heavy wheeling – the added exertion could lead to a stroke or heart attack, particularly if you’re unaccustomed to it.
  • If you or your child utilizes a motorized wheelchair, try to have immediate access to a extra battery pack.
  • Never use an extension cord with a space heater. Ovens should not be used to heat homes.  (Warming centers are available, please contact 311 if your family needs to be taken to one.)

 Winter Resources:

Warming Centers

 

FEMA WINTER STORMS & EXTREME COLD

CDC:Winter Weather Checklists

THE EMERGENCY ASSISTANCE VOLUNTARY REGISTRY!

 

 

FREE Workshop: How to Navigate the Illinois Disability System

Attorney Robert H. Farley, Jr.,Attorney Robert H. Farley, Jr., will be presenting a free Workshop on Tuesday, December 10, from 6:30 p.m. to 8:00 p.m. at the Naperville Public Library (95th Street Library) at 3015 Cedar Glade Drive, Naperville, IL. You will learn How To Navigate the Illinois Disability System and obtain all the benefits which your disabled child / adult is entitled to under the law. If your disabled son or daughter is 18 or older and is on the PUNS List, but is classified as “Future Planning,” then he or she will NOT be pulled from the PUNS List for services. Learn what you must do, to be successful. Topics to be covered will be: PUNS; How to Obtain Funding; Special Needs Trust; SSI and Guardianship.

Prior to attending or if you cannot attend the workshop, please download and print Attorney Farley’s “Book” on How to Navigate the Illinois Disability System at www.farley1.com. This is free download and the materials in the Book will be covered during the workshop. Please bring the book to the Workshop.

NEXT STEPS: Adult Life: Accessing Services

Concerned Parent parents stand with their childThe process of working with a rehabilitation counselor is discussed. Participants look at formal and informal supports that can assist the self-advocate in the transition process.

 

5 Things You Should Know About Families Dealing With Disability

Written by Jaimie Davis Smith
(This story is from the Huffington Post)

Disability is part of my family’s daily life and it has been since my oldest daughter was born with a chromosomal abnormality over seven years ago. My daughter’s genetic disorder resulted in a variety of disabilities, both cognitive and physical, that impact nearly every aspect of our lives. Usually we go along with our routine, but sometimes I am struck by how little others know about disability and what life is like for us. I have been reminded of this recently and wanted to share five things I wish everyone knew about disability.

1. We really, really dislike the word “retarded.” Please stop using it. Now. The r-word is loaded. It is pejorative. It is hurtful. For those of us with loved ones with cognitive disabilities, the use of the r-word turns them into lesser beings not worthy of the same dignity and rights of those not struggling with the same difficulties. Not everyone has thought about how using the r-word impacts those of us dealing with disability. I get that. But if we try to explain it to you please listen to why it is not okay to use the r-word even if, as I was told recently you “didn’t mean it that way” by a woman who then stormed off somehow angry with me for trying to explain to her how her use of this hateful term impacts my daughter and my family.

2. Some disabilities are invisible. It would be convenient if everyone that disability made it obvious to the rest of the world in some way. Individuals who have visual impairments often use white canes or seeing eye dogs to help them navigate the world. Everyone knows that a wheelchair indicates that someone does not have full use of their legs. But, the person dealing with muscle weakness who can walk, albeit with difficulty, may look completely capable to a casual observer. The child who has autism and deals with sensory issues may look like a typically developing child having a bad day or a brat to you. A child with no obvious differences may have an oxygen monitor or feeding tube tucked away under clothing. But, these disabilities are real. They make life difficult, often on a level unimaginable to most. Remember that the next time you think someone is “faking” a disability for some perceived advantage, whether it’s a parking spot closer to the door or skipping the line at Disney World. Most individuals with disabilities you cannot immediately recognize would gladly give up the small accommodations for which you may resent them if they could also give up the disability that entitles them to these accommodations in the first place.

3. It’s okay to ask questions when disabilities are visible. My daughter uses an adorable wheelchair. Not all wheelchairs are cute, but hers is sky blue with a rainbow embroidered on the seat and has front wheels that light up if you push it fast enough. To other children it looks like a fun ride. Kids point at it on the street. They ask for rides. Usually, their parents try to shush them and pull them away. Well, guess what? I know that my daughter is in a wheelchair. She’s been using it for years. When she’s in it, it’s clear to everyone that she has a disability. I don’t mind questions. In fact, I encourage them, especially from other children whom I often allow to push my daughter’s wheelchair a short distance to remove the mystery surrounding disability. I welcome the opportunity to explain to children that some people are just born differently. I don’t mind discussing disability with adults who may wonder about our circumstances. It is only through open dialogue and communication that we can educate others about disabilities of all types and promote acceptance.

4. We are not heroes. Families that include a loved one with a disability often hear that they are amazing or that others don’t know how they handle it all. But, the thing is, backing out is not an option. We did not take on a burden out of altruism. We deal with the circumstances we have been dealt because we have to, because we have no other choice. We deserve no special credit for this. I have no doubt that most of the people who make these statements to me would do the same if they were in my shoes. They wouldn’t have a choice.

5. Be considerate. You can try to step into our shoes and not impose your own rules on us. It’s not difficult to figure out some things that might make life easier for people with disabilities. But, sadly, most businesses and even schools and churches do not take the steps needed to welcome individuals with disabilities, such as installing ramps or elevators, until they are legally required to. If you want to be better, you can take small steps even when they are not legally required. You could open the door for a mother pushing a wheelchair even if it will delay you by a few seconds. You could ask your child to let a child with disabilities take a turn on the swing since it may be the only piece of playground equipment she could use. You can respect measures that have been put into place to help those with disabilities and their families by not sitting in clearly marked movie theater seats that have been especially designed to accommodate adaptive equipment. You can let the individual in the wheelchair on the elevator first, even if you have been waiting longer. The mother at my son’s school was certainly not considerate when she told me recently that a handicapped parking space could only be used by a family with a child with disabilities who attended that school — and not by a parent with disabilities or a family who may need to bring along a sibling with disabilities to drop-off. Imposing arbitrary, uninformed opinions about who “really” has a disability or need for accommodation is hurtful and harmful, especially when expressed in front of children who are still forming their opinions about disability and may be unsure how to react themselves.

 

2% regulation – Additional Comment Period

Comment Period on NPRMToday the U.S. Department of Education is reopening the comment period on the Notice of Proposed Rulemaking (NPRM) they issued in the late summer that would end the use of the 2% standards and assessments for students with disabilities by the end of this school year. The comment period on these regulations previously closed during the Federal Government shutdown and the U.S. Department has reopened the comment period for 7 days to ensure all interested parties have a chance to comment on these regulations. If you have not had a chance to comment on these proposed regulations, this new 7 day period, ending 11/26, is an excellent chance to weigh in on ending the use of the 2% standards and assessments for students with disabilities. You can access the document which provides information on the NPRM as well as this new comment period by clicking here: http://www.gpo.gov/fdsys/pkg/FR-2013-11-19/html/2013-27699.htm

Background: Presently, U.S. Department of Education regulations permit States to assess students with disabilities against modified academic achievement standards using alternate assessments. Only students with disabilities may be assessed using these alternate assessments and the number of such students assessed must be limited to the number that would constitute 2% of all students (This works out to about 20% of students with disabilities). These regulations are commonly referred to as the 2% regulations. The 2% regulations are different from the regulations which permit assessment of students with disabilities who have significant cognitive disabilities. In the States that use these 2% standards and assessments, students are generally assessed on less challenging academic content and very often not considered on a path to graduation with a regular high school diploma. This places the ability of these students to get post secondary education and training as well as employment after high school at risk.

States which have waivers of the Elementary and Secondary Education Act from the U.S. Department of Education (presently 42 States, DC and Puerto Rico have these waivers) have, as a condition of these waivers, to end the use of 2% standards and assessments by the end of this school year (2013-2014). The NPRM published by the Department would permanently end the use of the 2% standards and assessments by States, regardless of whether a State has received an ESEA waiver. This would put the students who are assessed against these 2% standards on a track to obtain a regular high school diploma.

Winter Social Skills Group for Preteens with Asperger’s Syndrome or High Functioning Autism

Logos for UIC and ITAPThis group will focus on skills integral for enhancing communication, cooperation, and confidence.

 



Topics include:

  • Verbal and Nonverbal Communication
  • Listening Skills
  • Stop and Think Strategies
  • Cooperation
  • Compromise
  • Friendship Skills
  • Social Problem Solving
  • Coping with Bullying and Teasing

 Our group is directed by therapists trained in working with pre-teens with ASD. We will utilize techniques to facilitate effective social communication in a supportive environment.  We follow the S.S. GRIN curriculum, a comprehensive curriculum specifically designed for children age 8-12 years with a diagnosis of High Functioning Autism.  Our goal is to provide skills that will last beyond the training and be useful in all of the environments in which the members participate.

  • Participants must have a diagnosis of High-Functioning Autism or Asperger’s Syndrome.
  • Members must be able to participate in the group without parents present
  • Members must have cognitive skills which enable them to verbally interact with peers
  • Members must not display aggressive, disruptive or self-injurious behaviors

Start Date:  January  9, 2014

Cost: Low cost, flat fee to be determined
Day: Thursdays – 12 sessions
Time:   4:15pm-5:15pm                                                         
Age:   8-12 years of age                              
Location:  Developmental Disabilities Family Clinic, 1640 W. Roosevelt Rd 1st floor, Chicago, IL

 

For more information, please contact Jessica Schultz, M.A. @ 312-996-7457 or e-mail: schultzj@uic.edu

Over 2,000 people received service and training from the Developmental Disabilities Family Clinics in FY2012. This work was made possible by grants from Illinois Department of Human Services, The Autism Program (TAP), The Combatting Autism Act (CAA), and by third party payments from Medicaid, Medicare and private insurance carriers.

Skills for Effective Parent Advocacy

Parents at trainingTired of getting the run-around while wading through and the alphabet soup of acronyms and not being sure of what you can and should do to help your child? This workshop will provide you with these important tools: •Going from Frustration to Power; •Who is an advocate and why be an advocate? •Follow six skills to effective advocacy.