Children with Special Needs
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Developmental Screenings for Preschoolers Illinois Early Childhood Intervention Clearinghouse LEAP Linking Educators and Parents The Lincoln Land Down Syndrome Society (LLDSS) Muscular Dystrophy Association Springfield District National Center for Learning Disabilities National Information Center for children and Youth with Disabilities (NICHCY) Project Reach: Illinois Deaf-Blind Services Recording for the Blind & Dyslexic (RFB&D) SPARC Springfield Association for Retarded Citizens Springfield Center for Independent Living (SCIL) United Cerebral Palsy Land of Lincoln
The Autism Program of Illinois (TAP)
The U.S. Center for Disease Control estimates 1 in 150 children may have an
Autism Spectrum Disorder. The Autism Program of Illinois, headquartered at The
Hope Institute for Children and Families was established in FY2003 by Public Act
93-0395. It is a comprehensive system development initiative with a primary
mandate to design the Autism Society of America Central Illinois Chapter
P.O. Box
8781 Phone/FAX: (217) 241-2023 Email: info@asacic.org We have support group meetings, host movie, theatre, and zoo events, offer flexible family support grants and ABA training program. Annual fundraisers are a golf event and walk/family fun day. Our region is approximately 60 mile radius around Springfield. Zipcodes are listed on our website. Contact: Teri Richards, parent of twins, one who has autism Vice President, Autism Society of America Central Illinois Chapter 217 741-0685. Zoo Night is Set 15, 2007 and the 1st Annual Walk is Oct. 7, 2007. See What’s Happening for details.
Autism Awareness Month Tips from a Mom As we recognize Autism Awareness month in the month of April I am reminded of where we have been, how far we have come and how far we have to go in life’s journey with a child with autism. In reflecting on the obstacles our son has faced, has conquered and those he continues to struggle with, I couldn’t help but think of what I would tell a family whose child has been newly diagnosed with autism to help make this maze a little bit easier to navigate.
Early intervention is key. Most states have a 0-3 year old program that enables young children to receive therapies to help their development (speech, physical, occupational and developmental therapy). Trust your gut on this one - too often families are told that boys develop slower than girls or you are just first time parents.
Educate yourself on vaccines. Children’s immune systems are different and as such react differently to the timing and dosages. Talk with a physician who specializes in the biomedical approach (DAN protocol) to helping their systems function properly.
I highly suggest at least trying the gluten (wheat, rye, barley)/casein (dairy)free diet. These are proteins found in many foods that children with autism often have an inability to process correctly.
Sensory integration is a real challenge for many on the spectrum – a good therapist can help design activities for the child to regulate their system.
Make sure to provide your child with an appropriate method of communication. For some this will include a picture exchange system (PECS), visual schedules, teaching a child to type and possibly assistive technology. The right modality can open a child with autism’s world. Remember: just because a child can’t speak doesn’t mean they have nothing to say.
Always have high expectations for the child. The old myth that the majority of people on the spectrum are mentally retarded is being negated daily. While some may have developmental delays, many are extremely intelligent and just need to be accessed correctly and given appropriate ways to communicate.
Set up a special needs trust to protect any assets you have set aside for them. There are attorneys that specialize in this area so make sure to hire someone who is trained in special needs.
Expose your child to a variety of places/situations. Social skills are very difficult for many on with autism – they do not come naturally as they do for typically developing peers. Take time to teach these and daily living skills.
Most importantly, remember your child is just that – a child first who happens to have autism. Their disability is only a part of who they are and you need to help the whole child reach his/her potential, whatever that may be. My favorite poem for my son is: Reach for the moon, even if you don’t make it you’ll land among the stars.
One Mom’s Autism Journey: I Never Thought It Could Happen To Us by Joelle Hardman Our family was perfect, a beautiful, healthy daughter and a healthy little blue eye blond-haired boy. My husband and I felt so blessed to have one of each. We dreamed of our children growing up to have happy lives with families of their own.
I wish that was the end of the story, but it’s just the beginning of a nightmare. My son went everywhere with me. He met all of his milestones on time, played with his sister, played with toys, learned to crawl and walk. He could even say “Momma” and “Dada” at 14 months. This child looked into my eyes and knew I was his Mommy until one day I noticed Daniel didn’t look at me like he did before. He stopped smiling and talking. He did not respond when I called his name. I really started to worry when our relatives began noticing that he had changed too. He wouldn‘t play with his sister anymore and actually seemed as if he didn’t even notice her any longer. While at the playground, he walked the perimeter of the fence over and over again, as if he was a rodent in a maze.
At 18 months, we took Daniel to see the doctor and he told us he was just delayed and this is typical when a child has an older sibling to talk for them. As I was listening to the doctor tell me not to worry, I noticed my son started flapping his hands and hopping across the room. I knew something was wrong. I did not accept the doctor’s “opinion,” so we immediately started Speech therapy and Developmental and Occupational therapy. As he slipped further and further from us into a world of his own, his therapy became useless.
It took us a year to get into a neurologist and within 15 minutes with the doctor, he informed us that our son had Autism. I couldn’t breathe. I was numb and became very angry. I had no idea how to deal with an autistic child. No clue at all. My husband struggled with accepting it. We both went through our own grief, which was very hard on our marriage. We knew something had happened to our son. This wasn’t the same kid that he was when he was 12-months-old.
I refused to believe all the “specialists” that he was born this way, because he was fine until he turned 15-months-old. That’s when we learned about Mercury being in the vaccines we gave Daniel up until that point. It was even in the vaccines I was given while I was pregnant.
About a year later, we learned about biomedical treatment for children with Autism. I met a woman at a support group who was taking her son to a DAN! (Defeat Autism Now!) doctor. They tested for heavy metals, minerals and food intolerances. We took Daniel to see this doctor and he tested intolerable to wheat, dairy, and many other things which made up his diet. As soon as we took these foods away from him, the fog began to lift. Then we added vitamins, which gave us even better results. I knew we were on to something when he began talking again. One day when he was 5, he even went up and introduced himself to a complete stranger and asked what their name was. He also started pretending for the first time, started using more eye contact, and playing with neighbor kids.
Within the last year (and after much research), we began chelation therapy for Daniel. This is a medical process which helps remove metals from the body. This is especially important in children who do not excrete metals normally, which is the case with Daniel. Since implementing chelation, in addition to the biomedical protocol, we are now seeing even more improvements with our son.
All I wanted when I gave birth was to be a mommy to my son. I now have the title of advocate, teacher, nurse and therapist with the “Mommy” title. It is a constant fight with the mainstream doctors, insurance companies and school systems to recognize what Daniel needs. But I don’t mind, because I will not stop my pursuit to give my child the best chance at a normal life. He has taught me patience, perseverance and unconditional love. And most of all, he taught me about hope and faith, which are the two things that get me through each and every day.
MORE INFO: Joelle recommends the Biomedical Intervention for Autism Springfield Support Group, which meets on the 4th Monday of each month. Meetings take place from 7:00 p.m. to 9:00 p.m. on 1112 Rickard Road in Springfield. Contact Lila White at 789-4759 for more information.
For additional information related to biomedical treatment for Autism, visit these websites: www.generationrescue.org or www.autismwebsite.com. Books include: Evidence of Harm by David Kirby and Effective Biomedical Treatments by Jon B. Pangborn and Sydney Baker.
Additional resources:
Child and Family Connections #18 Connecting Families and Their Children Birth to Three Years Old to Community Services
Child and Family Connections is a
statewide system that has been
established to ensure that all referrals
of children under the age of three to
the Early Intervention System receive a
timely response by a service coordinator
in a prompt, professional, and
family-centered manner. Early
Intervention services are designed to
help each child reach his or her
individual potential. These services
specifically address a child's
developmental delays, disabilities or
at-risk conditions. Child and Family
Connections provides free developmental
screenings and evaluations. Children
who may be eligible for Early
Intervention services have one or more
of the following conditions: To refer a child who lives in Logan, Mason, Menard or Sangamon County to Early Intervention call: 1-888-217-3505 or 217-793-3990 THE SOONER WE START, THE FARTHER THEY'LL GO!!
Developmental Screenings by the Sangamon Area Special Education District Developmental screening is offered by the Sangamon Area Special Education District in cooperation with the local school districts and the Illinois Department of Public Health. It is designed to identify children who are experiencing developmental delays or specific handicaps which will affect their progress in school. The screening program is a free service open to all 2 ½ to 5 year old children residing in the following school districts: A-C Central, Athens, Auburn, Ball/Chatham, Divernon, Girard, Greenview, Illiopolis, New Berlin, Pawnee, Pleasant Plains, Petersburg(PORTA), Riverton, Rochester, Tri-City, Virden, Virginia, Williamsville.
Illinois Department of Human Services 217-782-1981 http://www.state.il.us/agency/dhs/earlyint/ei01parent.html
1315 W. Lawrence
Springfield, Il 726-1839
epilepsy@spfldsparc.org
www.familyvillage.wisc.edu/index.html
The Hope
School
Illinois Early Childhood Intervention Clearinghouse 223 South Third Street Springfield, IL 62701 800-852-4302
Don’t miss one of the finest libraries on child development and disability issues in the Midwest that is located right here in Springfield, Illinois and hope that you will consider adding it to your fine list of local resources. The Illinois Early Childhood Intervention Clearinghouse has a large lending library devoted to young children that has been here in Springfield since 1986. They have more than 9,000 books and over 1,600 videos devoted to the topic. We are part of the Rolling Prairie Library System, which means that Springfield area parents can also access our collection through their local libraries. Enjoy resources in all areas of parenting, from working with children with special needs to everyday parenting concerns like toilet training, language and literacy development and child care issues. Located in downtown Springfield, they are open to the public on weekdays from 8:00 a.m. to 4:30 p.m.
125 Webster Avenue Jacksonville, IL 62650 217-479-4200
Admissions & Records: Carolyn.Eilering@illinois.gov General Information: Myriam.Young@illinois.gov Superintendent: Marybeth.Lauderdale@illinois.gov Parent-Infant Program – 217-479-4232 The ISD Parent-Infant Program for children ages from birth to three. Pre-School/Pre-Kindergarten – 217-479-4255. The Pre-school and pre-kindergarten program for children ages three to five, or above if the child is below the five year developmental level. Elementary Program – 217-479-4255 The Elementary offers schooling for 1st to 5th grade pupils. Junior High School – 217-479-4252 The junior high offers education for 6th to 8th grade pupils. High School – 217-479-4246 The high school programs for 9th to 12th grade.
LEAP (Linking Educators and Parents) LEAP - Linking Educators and Parents of dyslexic and learning disabled children from infants through high school meets regularly in Springfield as a support group for teachers, parents, and caregivers of children with Learning Disabilities, ADHD, Dyslexia, Autism, or just struggling learners. Contact Lynn Samuelson at 726-9204 or habiland-samuelson@att.net for more information on the next meeting.
The Lincoln Land Down Syndrome Society (LLDSS) 217-622-1992 President, Tim Rigby The Lincoln Land Down Syndrome Society (LLDSS) is an Illinois not-for-profit, tax-exempt organization, with approximately 50 member-families throughout central Illinois. LLDSS was organized to promote awareness, inclusion, acceptance and education of individuals with Down syndrome and other developmental disabilities.
In cooperation with the YMCA of Springfield, LLDSS hosts swim lessons for individuals with developmental disabilities and awards scholarships to its members for classes and camps specifically designed for individuals with developmental disabilities. These include horseback riding lessons and camps hosted by the local branch of UCP, dance classes hosted by the Turnout Movement Arts Studio and cardio kickboxing classes. Through its affiliate, the Chatham Area Special Athletics, LLDSS helps children train for Special Olympics competitions. LLDSS is involved in community outreach, specifically involving existing and new families with a member having Down syndrome, and LLDSS makes annual contributions to, and is an affiliate of, the National Down Syndrome Society.
To fund its programs, LLDSS hosts a Buddy Walk in the fall of each year at Washington Park which is attended by over 600 people annually. In addition, LLDSS hosted its first annual golf outing in May, 2006. LLDSS contributed 100% of the net proceeds from the golf outing (over $14,000) to the Edwin Watts Southwind Park, which will be a fully accessible and ADA compliant park serving all families, including those with a member having a disability. Note: See Down Syndrome Baby Play Group below.
Come join us to play, share stories with other parents, and exchange valuable advice and resources! We meet the 2nd Monday of the month at 9:00 a.m. at Sugar Creek Methodist Church in Chatham. Hosted by Amanda Ledferd and Deb Gossrow (both moms of young children with Down Syndrome) Contact: Amanda Ledferd at 217-529-2041 or at ldfrdfam5@aol.com or Deb Gossrow at gossrow3@comcast.net
Muscular Dystrophy Association Springfield District Springfield District 2908 Greenbriar, Suite B Spr8ingfield 787-6940 www.mdausa.org
National Center for Learning Disabilities A new resource guide from The National Center for Learning Disabilities will
take you through the special education process.
National Information Center for children and Youth with Disabilities (NICHCY)
Project Reach: Illinois
Deaf-Blind Services Recording for the Blind & Dyslexic (RFB&D) Contact: Courtney Scaife-Outreach Coordinator 217- 801-1781
For 60 years,
Recording for the Blind & Dyslexic (RFB&D), a national nonprofit, volunteer
organization, has been the leading producer of accessible educational materials
for students with disabilities such as visual impairment or dyslexia that make
reading standard print difficult or impossible. With titles available in every
subject area and grade level from kindergarten through graduate studies, RFB&D's
digitally recorded textbooks are effective learning tools for students
challenged by the printed page.
SPARC Springfield
Association for Retarded Citizens
jrodgers@spfldsparc.org Springfield Center for Independent Living (SCIL) 330 South Grand Ave. West, Springfield IL 62704 1-800-447-4221 Can work one-on-one with parents to assist them in understanding the transition process and help them play an active role in that process. Newsletters are mailed quarterly. Workshops and support groups are held for parents of any child with a disability and there is a support group for students ages 14-21. SCIL serves the 5-county service area of Sangamon, Menard, Logan, Christian and Montgomery. All services are free. For more information, please call 523-2587.
United Cerebral Palsy Land of Lincoln 101 N. 16th street in Springfield, 525-6522, http://www.ucpll.org/ UCPLL provides comprehensive services to over 1200 infants, children and adults with disabilities in 27 counties in Central Illinois. Services include therapies, job training and placement, assistive technology, summer camps, residential support, day services, respite, case management, and advocacy. All money raised by UCP stays right here in the local community to help local children and adults with disabilities.
“Top 10 Websites” for Parents of Children with Disabilities and/or Delays www.familyvillage.wisc.edu/index.html www.spiesforparents.cpd.usu.edu www.coping.org/copingbook/coping.htm
Early Intervention Resources from Illinois Department of Early Intervention website: http://www.dhs.state.il.us/ei
Children’s Services Directory. Phone: 800-323-4769 (voice/TTY). Offers information about the early interventions system and on where to call for services. In English and Spanish.
Illinois Early Childhood Intervention Clearinghouse. Phone: 800-852-4302. Loans books, videos and other materials on early childhood development.
Hearing and Vision Connections
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