Support for Special Education Services in a Pandemic

By: Sharon Pike, Parent Liaison, with Brad Dembs, J.D., Matt Cohen & Associates

Easterseals DuPage & Fox Valley clinicians and staff provide information, education and support that address the concerns and stressors which may accompany having a child with a developmental delay or disability.  As a parent liaison at Easterseals, a highly trained parent of a child with a disability, we provide caregivers support from the unique perspective of someone “who has been there.” To provide more virtual support, we are connecting our favorite professionals to you through free webinars that answer your needs during this unique time.

Towards the end of the summer, we hosted a live Q&A event where caregiver’s asked questions to prepare for the complex upcoming school year with COVID-19 and how to best advocate for their children’s unique needs.

Now that school has been in session, join us for Part 2 on October 1 at 5:30 PM. Register for the Special Education: Remote, Hybrid & In-School Learning Check-In by clicking here.

Discussions was led by Brad Dembs, J.D., an Attorney with Matt Cohen and Associates, a law firm who specializes on special education, disability rights, and school-related issues. The following is paraphrased from the original discussion to provide insight to any who missed.

In general, caregivers for children who have an IEP are an essential part of their child’s education, now more than ever.

Q1: With so much conflicting information on education plans, and things changing so often, how can parents actually plan, or prioritize the most important parts of a child’s education right now?

The first step in answering this question would be to determine what’s the most essential part of your child’s educational goals. Ask yourself questions such as “What skills is my child learning and developing,” “Where was my child’s progress when remote learning started,” “Where did my child’s goals on their IEP expect them to be by now,” and “Has my child’s learning progressed, failed to progress, or regressed since remote learning started?” Asking yourself these questions can help clue you into what aspects of learning are most important to focus on. 

For many families, the most critical areas to prioritize are the development of threshold skills. For example, learning to read is a crucial threshold skill. Reading is used in all subjects and is one of the key fundamental building blocks of educational learning. If reading is something your child struggles with, that is something to prioritize when talking to your child’s teacher and about your child’s needs. Another essential threshold skill to focus on could include social skill development. It depends on your child and their disability, but in general, it’s helpful to think about the question “What does my child need now to take them to the next step” when thinking about educational goals to prioritize. 

Therapy Minutes & IEP

Q1: What are our rights in regards to e-learning and therapy minutes for remote learning?

A: As a parent, your rights have not changed. You are entitled to the same minutes that are in your child’s IEP. However, the reality is that school districts don’t have the same capacity to provide all those minutes or the ability to offer them in the same way they did in the past. Because of this, you must be flexible with your expectations even though your rights have not changed.

Q2: What should I expect for IEP minutes for OT & PT when a child usually received individual treatment. In the Spring, I was emailed a lesson, no Zoom tele-therapy offered. Is this correct?

A: No, and especially no, if there was not a discussion about it. This is what we would call a unilateral change outside the IEP process and is inappropriate. I would recommend putting a request in writing about the minutes that are needed and why those minutes are required. It always helps to have things in writing and to have additional support for what you’re requesting. If your child sees a private ST, PT, OT or mental health therapist and those clinicians provide a letter attesting to your child’s needs; it further validates your school district request. 

Service Minutes & Remote Learning

Unfortunately, not every school district will fulfill every obligation the way it is supposed to, and you may have to advocate for those services with methods discussed previously. Being flexible with your expectations is necessary as the guidance received from the State Board of Education is somewhat inconsistent and much is dependent on available funding and resources at each school district.

If you have any concerns about your child’s services, it is essential to request a meeting with your district and express your concerns. Start with what’s in the IEP and let them know what you have determined as a team for your child needs going forward. 

Again, make the process as collaborative as possible, be communicative in writing about what you’re looking for with your school district. If possible, provide documentation about why the request is essential and needed (more below and in resources). If you or another caregiver are home when your child receives remote learning, you have more insight because you have more opportunities to see what’s going on in your child’s education and see if what’s written in the IEP is being provided.

Q1: How do I communicate concerns with regression and remote learning?

A: Caregivers need to gather as much data as they can about how their child is performing. Because schools see their children less in remote learning, it’s essential for parents to be that resource and tell their child’s school what they can and can’t do. If remote learning is becoming impossible for your child, it is a tough position to be in.

In this situation, we recommend you talk to your school about having a teacher or service provider come to the home and provide service at a responsible distance. The accommodation is unfortunately unlikely, but it never hurts to ask. The end decision is up to the individual school district’s discretion. If you’re in a position where your school denies at-home accommodations, keep track of your child’s regression to be ready to advocate for more intensive services to make up for the regression when more in-person learning and services are available. 

This is called compensatory education, which refers to services that are needed above what has been provided to make progress that should have been made without a gap of service in the first place. This could include extra therapy minutes or more intensive instruction.

A Return to School

Q1: Some disabilities make it difficult to comply with COVID precautions, how can we navigate these to ensure the safety of all children but continue our child’s education?

A: This would need to be taken on a case by case basis depending on what the situation is. The Board of Education and Department of Public Health’s guidance is relatively general, and the end discretion is left up to the school district. In the case of masks, if a child cannot wear a mask, a face shield may be recommended as a reasonable substitute. Still, the child would have to practice social distancing as rigidly as possible because there is less protection with a face shield than a facemask. Not every school will allow children to wear face shields because it could be considered a significant alteration of their safety precautions. Some children who cannot wear a facemask may also not be able to wear a face shield. In other more extreme cases, a child who cannot comply with school safety procedures such as wearing a mask may be asked to remain in remote learning even when other children go back to school. 

Q2: How should students with disabilities who require one-to-one paraprofessionals be accommodated in a plan that emphasizes 6 feet of social distancing?

A: This may be a scenario where the support that’s written in the IEP may have to be changed due to practical considerations. The child’s individual needs need to be assessed alongside safety practices. This would depend on whether the child can attend school without the help of a paraprofessional. If they cannot, and it’s still possible to have safety protection in place via wearing a mask, it may be appropriate to have an aide closer than 6 feet. Schools should be training and updating their staff on safety procedures, particularly related to individual students with disabilities. Individual accommodations will need to considered by staff to make it possible for students with disabilities to attend safely. 

Q3: Can I request certain precautions to be taken if my child goes back to school in the Fall? My child likes to lick and put her fingers/hands in her mouth.

A: You have the right to request accommodations for safety. You should discuss this with your district and any outside providers your working with as they can help you determine what can be done to accommodate any safety issues or concerns. This is a challenging example because accommodations of gloves or other hand protection could quickly become contaminated as easily as bare hands. This is a case where a collaborative effort would need to be reached between your education provider and any other outside clinicians. If no attempts work, the school should be willing to accommodate and continue to provide remote learning. 

Resources

Matt Cohen & Associates provide a number of resources that can help document needs and open communication with your child’s education providers. See the links below.

mca-remote-elearning-advocacy-suggestionsDownload

mca-form-letter-for-parents-to-address-remote-learning-issuesDownload

mca-collecting-data-on-your-childDownload

keep-track-of-what-your-child-is-doing-and-gettingDownload

mca-added-service-announcementDownload

This is a big topic that has many variables for each child’s needs and school district. For more information, there are recorded presentations on our website that go into detail at: https://www.mattcohenandassociates.com/presentations/. 

Parent Liaisons at Easterseals DuPage & Fox Valley have firsthand experience with IEP meetings and are available to answer questions or provide resources on the topic. For more information, visit: https://www.easterseals.com/dfv/explore-resources/for-caregivers/iep-help.html.

Commonly Asked Questions About Down Syndrome

By: Kelly Nesbitt, MOT, OTR/L, Occupational Therapist

Down Syndrome, or Trisomy 21, is one of the more common genetic disorders in which children are born with 3 (instead of the normal 2) copies of chromosome 21.

There are common physical characteristics of children with Down Syndrome, such as upwardly slanted eyes, short fingers, small facial features, and a flattened nasal bridge. Children with Down Syndrome also may have varying degrees of intellectual disability, may develop heart conditions, and are at risk for visual impairments. Many children with Down’s Syndrome also have low tone (meaning that their muscles have less of a “taut” quality to them, making their joints appear “loose” or “floppy”).

Because of these physical and intellectual challenges that children with Down Syndrome live with, many children with Down Syndrome receive Occupational, Physical, and Speech therapies in order to address these concerns and make them as independent as possible.

That was the very medical analysis of Down Syndrome… but if you are a parent of a child who was recently diagnosed with Down Syndrome, you are not thinking of statistics, factoids, and medical jargon. You would be thinking, “What does this mean for my child?”

While I am not a parent of a child with Down Syndrome, nor do I pretend to be the holder of all the knowledge on Down Syndrome, I’ll try to answer common questions from my perspective as a Pediatric Occupational Therapist and a person who is proud to have friends with the condition.  

What services to I need to look into for my child?

Young children with a new diagnosis of Down Syndrome (under 3 years old) can qualify through Early Intervention Services through the state of Illinois. Early Intervention brings trained specialists into the home of eligible children with disabilities or delays and provides high-quality therapeutic intervention.

To start services, a parent schedules an evaluation through a Child and Family Connections provider closest to their home (featured in the link above). After the evaluator determines a child qualifies with a 30 percent delay in development in any area, or are at risk of developmental delays, he/she will set up An Individualized Family Service Plan (IFSP). The IFSP lists child and family strengths, needs, resources, priorities, and concerns. It also identifies services to be provided to your child.  

Many Easterseals therapists are trained and credentialed by the State of Illinois Early Intervention System. Parents can request an Easterseals therapist when qualifying for services and speaking with the EI Case Manager. 

Team members could include Developmental therapists, Occupational therapists, Physical therapists, Speech therapists, Audiologists, Social Workers, Nursing, Assistive Technology, and nutritionists, just to name a few.  These therapists can help your child with global strength, communicating effectively, sensory processing issues, fine and gross motor skills, and getting around in the community.

Once a child “ages out” of Early Intervention at 3 years old, many children with Down Syndrome continue to get services as needed through schools and outpatient based clinics, such as your local Easterseals.

Why would my child with Down Syndrome need Occupational, Physical, and/or Speech therapy?

I have worked with children with Down Syndrome as an Occupational Therapist for a number of reasons and most often to address the following:

• sensory processing difficulties
• trouble with transitions
• behavior management
• feeding difficulties
• handwriting
• dressing
• manipulating fasteners
• bathing
• social skills
• global strength
• participating in family and school routines
• access to community activities
• navigating their physical environment safely

I will refer children with Down Syndrome to Physical Therapy and Speech Therapy as well. Physical Therapists can help children with Down Syndrome ambulate and have sufficient strength to be able to crawl, squat down, skip, climb stairs, propel their walkers/wheelchairs or walk.

Speech Therapists can help a child with Down Syndrome improve articulation (intelligibility of spoken language), oral motor skills for feeding and speaking, pragmatic language skills, improving receptive language skills, and accessing augmentative forms of communication (picture boards or high-tech communication devices).

Will my child be able to go to school?

Yes! Whether it’s through an Individualized Education Plan (IEP) or a 504 plan, there are federal and state laws set in place that require schools to make education accessible to children with disabilities.  These plans set specific goals and help place children in the best environment at school to support their specific needs. Just because your child has Down Syndrome does not mean that they cannot have the same educational opportunities as their peers for K-12.

Can my child go to college?

College can be in the cards for your child. Click here for a list of some Illinois universities/colleges that have programs for adults with disabilities. 

Do children with Down Syndrome have friends?

Certainly! Children with Down Syndrome are sweet, funny, kind, and loyal friends. There are organizations that help give kids with Down Syndrome more exposure to similar-aged peers in the context of fun outings and school events.

I am proud supporter of Best Buddies International, whose mission is “to end social, physical, and economic isolation of the 200 million people with intellectual and developmental disabilities.” Best Buddies programs at elementary, middle and high schools pair students with intellectual or developmental disabilities with a similar aged peer and facilitate friendships between them!

My involvement in Best Buddies was one of the most positive experiences of my life and helped inspire me to become an Occupational Therapist. I am still friends with my high school buddies and we regularly keep in contact, even a decade later! Want to learn more? Visit https://www.bestbuddies.org

Do people with Down Syndrome date and get married?

Absolutely! I know people with Down Syndrome who are in long-term, committed relationships. There are even dating apps to help people with disabilities find that special someone.  Like all relationships, it’s important for people to set boundaries, expectations, and have mutual love and respect for one another, so why can’t people with Down Syndrome experience dating and marriage?

Can someone with Down Syndrome have a job and live alone?

Yes! There are job-training classes available through local community colleges and different companies that can lead to employment for people with Down Syndrome.

As for a living situation, people with Down Syndrome have a variety of options depending on their independence levels.

Options include:

• living at home with family
• living at a partially-independent living facilities
• living in “shared living” arrangements in which adults with Down Syndrome can share an apartment with a roommate
• living independently 

Additional housing resources are available through the National Down Syndrome Society.

Will my child have anyone like them to look up to in the media?

Of late, there are more actors with Down Syndrome in the media being celebrated! Some examples include:

• • Lauren Potter from “Glee” – Lauren Potter has amazing videos/PSAs and works a lot

    

    Lauren Potter in her role as Becky on Glee.

    on advocating for people with Down Syndrome – I highly recommend following her on social media

• • Jamie Brewer from “American Horror Story”

• • Sarah Gordy from “Call the Midwife” and “Upstairs, Downstairs”

• • Madeline Stuart – New York Fashion Week model

• • Luke Zimmerman from “The Secret Life of the American Teenager”

• Born This Way – Reality show on A&E that follows the lives of young adults with Down Syndrome through their experiences in their careers, friendships, family, dating, and marriage.

What organizations are there out there to support my child?

There are a wealth of organizations in the Chicago area that are designed to help children with Down Syndrome, both medically and socially. Here are just a few!

• • National Association for Down Syndrome

• • Global Down Syndrome Foundation

• • Easterseals

• • Central Illinois Down Syndrome Organization

• • Celebrate Differences

How can I show my support for children with Down Syndrome?

In addition to getting involved with the organizations mentioned above, the simplest way to show your support is to wear mismatched socks on World Down Syndrome Day which is March 21, 2019! 

The goal of World Down Syndrome day is to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome

While it’s impossible to depict the complexities and life experiences of people with Down Syndrome as someone without the condition, I hope I gave a brief peek into what a child with Down Syndrome’s future could look like. The road ahead may seem daunting once a child receives the initial diagnosis, but parents should take comfort in knowing that there are many resources available to help during every step. The parents I work with have told me of both the amazing successes and the difficult days their child has experienced. 

When it comes down to it, a child with Down Syndrome is still a child who wants the same things in life as anyone else: to be loved and accepted. So let’s show our love and acceptance of people with Down Syndrome by wearing mismatched socks on March 21!

I think that actress Lauren Potter puts it best, “Someone once told me that different isn’t bad – different is just different!”

For more information on the services Easterseals provides for children with Down Syndrome, visit: http://www.easterseals.com/dfv/our-programs/downsyndrome.html

Back to School Organization

By: Laura Van Zandt, MS, OTR/L

With many of our children returning back to school, I thought this would be a good time to review some strategies to help with school organization. Kids need organization skills in order to function during their school day as well as to get their homework done efficiently at home. If your child struggles with a messy desk, overstuffed backpack, keeping homework and classroom assignments organized, or lost and missing parent/teacher communication slips then hopefully you can find some tips and tricks in this blog. Remember every child is different and what works well for you or another child may not necessarily work well for your own child.

• Most importantly develop routines and stick to them as closely as possible. Some children might benefit from additional support to help learn the routine such as checklists, picture schedules, and/or social stories. Younger children might also benefit from turning the routine into a fun song.
• Create backpack organization systems. Look for backpacks that offer multiple compartments to denote separate spaces. A backpack with at least two compartments is highly recommended. Use a zippered pouch (clear is the best) for pencils, erasers, calculators, etc. in the backpack.
  1. Please check out my previous post on backpack safety.
• Place a laminated checklist clipped to your child’s backpack zipper that lists what needs to be brought home each day. This one from Understood.org is great. 
• Go through the backpack on a regular basis with your child until he/she gets the hang of keeping it organized. Gradually give your child more responsibility and continue to check in even when you have turned in all the responsibility to your child.
• Create a simple schoolwork folder system. A simple 2 pocket folder often works best. Use a bright sticker to place on one side for “KEEP AT HOME” and another bright sticker for the opposite pocket for “BRING BACK”. If your children are older, you can create a color coded system that corresponds to each class. Books and notebooks can use prefabricated book covers or you can use colored paper to create book covers in a variety of colors.

Picture from caffeinatedconclusions.blogspot

• Depending on the age of your child you might start to create a really good binder system. The best ones have a locking rig. Some binders have a clear plastic cover which can be used to create large labels on the outside for different subjects (if you are using a different binder for each subject) or you can use it to hold assignment sheets.
  1. If you are going to start a binder system, then you should invest in a few more organization assistants. Things like subject dividers, a zippered pencil pouch, sheet protectors, two pocket three-hold punched folders, and a portable three-hold punch are really helpful. You can organize each subject section the same. Label each subject divider tab and then include an empty sheet protector immediately behind for important handouts. Behind the sheet protector you can include a folder which follows the same simple schoolwork folder system idea above.
  2. A different option could also be to continue to use the subject divers, zippered pencil pouch, sheet protectors, two pocket three-hold punched folders, and a portable three-hold punch; however, instead of using the simple schoolwork folder system idea above with the two pocket folders, you can create one global folder that is in front of the binder where your child put homework for each class in front. At the end of the day, when at home, you can then sit with your child and help organize their homework when completed back into each individual subject folder.

• Some children might do also better with an accordion file based system. One suggestion for organized would be using the front section to keep your child’s homework planner or global two-pocket folder homework folder. Each additional pocket would be labelled with the different subjects and might include a separate pad of paper for that subject. I like to avoid loose sheets of paper as much as possible with an accordion system as I find they tend to slide down.
• Create an organization system for lockers. Some children like to create a container system where they use separate containers for different belongings which are labeled with pictures on the outside to know what goes inside each bin. You can also add a picture to the locker for a visual cue for where each item belongs which the locker to further help keep things organized. Shelves are also helpful to better divide the space.
  1. To help you and your child determine the most logical and efficient way to organize the locker and backpack, here are some helpful questions (source: The Organized Student)
  2. What is your child’s schedule like? If the schedule is consistent, you can probably just separate the locker into two sections, morning and afternoon. If it changes every day, you might want to organize differently
  3. What extracurricular activities does your child participate in and what supplies/equipment is needed?
  4. Does your child keep supplies and equipment in a locker at school or do they travel back/forth between school and home on a regular basis?
  5. How many books is your child required to keep track of throughout the day
  6. Does your child’s school offer a second set of textbooks on loan?
  7. What type of storage and accessories does the locker already contain?
  8. Does your child have time to go back to his/her locker between classes?

 

• Create a homework station at home. Include all necessary school supplies such as pencils, pens, crayons, markers, glue, scissors, paper, etc. You can use everyday items (mason jars, muffin tin) to help organize items. Containers available at any office/home good are great ways to help organize. You can attach labels made from a label marker or also just use post-its and adhere using clear tape. Every item has its own place and it is easy to spot. Ask your child’s school if it is possible to get a second set of textbooks to eliminate the need to bring books back and forth between school and home. Mark off spaces for items like books and pencil box using painter’s tape. If your child is older, you might think about creating a “desktop file box” which is described in a lot more detailed in The Organized Student book.

 

• Help your child learn to breakdown assignments into manageable chunks. One example includes folding worksheets into sections that can be completed before moving onto the next section.
• Invest in some telling time systems. It is often helpful to breakdown into the concept of telling time, daily time, weekly time, and monthly time. I prefer to use analog’s watches or timers for this as you can see the passage of time which is missing from digital systems. When first learning to tell time and gauge time, create from fun activities to experiment with by guessing how long it will take and then compare guess to actual. It might be useful to have several timers. One for the global amount of time your child/you think he/she needs to complete the assignments and an individual one to break down individual assignments into manageable chunks and to add a spot for a quick break. If you can find an analog clock that also allows for a quick glance to see the time digitally, that might also help.
• Finally, if you have read any of our previous posts on executive functions or attended our executive function client group, then you might be familiar with the group Cognitive Connections. They developed an app that allows users to create a time marker to get ready for work, a timer marker to check in during work, and a marker when the work is planned to end. There are tones activities when the time reaches each marker. This could also be a good choice for some children.
• The key to any organization system is be flexible to your child’s unique organizational style and needs as well as be consistent and offer check-ins until your child has mastered the system. Even when your child has mastered the system, continue to offer periodic support.References and Helpful Resources:
  • Smart But Scattered: The Revolutionary “Executive Skills” Approach to Helping Kids Reach Their Intentional by Peg Dawson and Richard Guare
  • Organizing the Disorganized Child: Simple Strategies to Succeed in School by Martin L. Kutscher M.D. and Marcella Morgan
  • The Organized Student: Teaching Children the Skills for Success in School and Beyond by Donna Goldberg
  • Get Organized Without Losing It by Janet S. Fox
  • The Sensory Child Gets Organized: Proven Systems for Rigid, Anxious, or Distracted Kids by Carolyn Dalgliesh

10 great books to help you talk to children about disabilities

By: Karyn Voels Malesevic, Au.D., CCC-A

Many of us have struggled to find the right words when talking to our kids.  Knowing how much to say, or how little, or what type of words to use can be a challenge.

Enter the power of a good book!

Sitting down and reading a book about a character that may have the same disability as your child can be a great way to start the conversation.  Sharing stories is also a great way to help siblings and classmates understand and appreciate differences, or to help your child(ren) prepare for a big transition or difficult news.  A good book helps finding the right words much easier.

We’ve complied a list of ten great children’s books to help confront tough issues.

To view our complete list of book recommendations for parents, caregivers and children, follow us on Goodreads.

1. Rolling Along with Goldilocks and the Three Bears by Cindy Meyers- In this story baby bear uses a wheelchair, goes to physical therapy, and ultimately makes friends with Goldilocks. The story unfolds many of the familiar scenes of the classic tale ending on a hopeful note.
2. Wonder by R.J. Palacio- August (Auggie) Pullman was born with a facial deformity preventing him from going to a mainstream school that is until now. He’s about to start 5th grade and being the new kid can be hard. Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
   
3. We’ll Paint the Octopus Red by Stephanie Stuve- Bodeen- Six-year-old Emma is gladly waiting for  the birth of her new baby brother or sister. She imagines all of the things they can do together. They’ll go to Grandpa’s farm to feed the calves, ride in the back of the mini-van making faces at the cars that go by, fly on airplanes, and someday, they’ll even go to Africa on a safari.
4. Kids Talk about Bullying by Carrie Finn-  People make fun of me for wearing glasses. What should I do? Super Sam the problem solver will give you some strong advice on bullies.
5. The Way I Act by Steve Metzger- This vividly illustrated story is a fun way to show children how their actions may affect others. This book explores a variety of attitudes and traits, like compassion and bravery. Children will instantly recognize and identify scenarios such as meeting new kids, romping on the playground, and finishing a puzzle. Each scene illustrates proper ways to act and encourages readers to do the right thing.
6. Rolling Along: The Story of Taylor and His Wheelchair by Jamee Heelan- Taylor and Tyler are twin brothers and best friends. But the twins are different in one significant way: Taylor has cerebral palsy, while Tyler does not. Taylor explains to readers why wheelchairs allow many people to be more independent. This triumphant story offers a valuable look at both adjusting to a wheelchair and facing physical limitations with boundless energy and determination.
7. No, David! by David Shannon- When author David Shannon was five years old, he wrote a semi-autobiographical story of a little kid who broke all his mother’s rules. He chewed with his mouth open (and full of food), he jumped on the furniture, and he broke his mother’s vase! As a result, all David ever heard his mother say was “No, David!” Here is his story.
8. Nobody Knew What to Do: A Story about Bullying by Becky Ray McCain- This story tells how one child found the courage to tell a teacher about Ray, who was being picked on and bullied by other kids in school.
9. Sara’s Secret by Suzanne Wanous- This author skillfully manages to go beyond the message to the heart of Sara’s guilt and embarrassment. Sara and Justin are more than stiff cardboard characters, and their humanity poignantly validates the feelings of children who have disabled siblings. Haas’ fluid, striking watercolors convey Sara’s emotions with an intensity that is well matched to the text.
10. Let’s Talk about It: Extraordinary Friends: Let’s Talk About It by Fred Rogers- How do you get to know someone in a wheelchair? Sometimes it’s hard to know where to begin. In his characteristically wise and gentle way, Rogers challenges the stereotypes that often plague children with special needs and celebrates six children who are extraordinary friends.

There are many great books out there, too many to list here!
Click this link to take you to our virtual bookshelves.  Here you will find the entire list of our recommendations, all available to check out in person at our Parent Resource Library.  Your local library should have many of these as well.

Another extensive list of books can be found HERE.

If you find your family confronted with a serious  issue or unexpected change that impacts your child, it’s important to prepare yourself before having a difficult conversation.  Here are some resources to help guide your first steps in talking about illness, death, divorce or autism:

1. Helping children when a family member has cancer HERE.
2. Helping your child deal with death HERE.
3. An age by age guide for talking with kids about divorce HERE.
4. Telling your child that they have autism HERE.

It often helps to connect with a professional who can answer questions and recommend an approach.

 

To connect with a social worker or parent liaison at Easter Seals DuPage & Fox Valley visit: http://www.easterseals.com/dfv/explore-resources/for-caregivers/family-services.html

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Learn more about how Easter Seals DuPage & Fox Valley is supporting literacy for children with special needs, check out our latest course offering in partnership with Dr. Jan Wasowicz and SPELL-Links.
Building the Brain for Literacy: Prerequisites for Successful Spelling & Reading A Multi-Linguistic, Prescriptive Assessment and Speech to Print Instruction

A Checklist for this Year’s IEP

By: Sharon Pike, Family Services Parent Liaison

As one of the Parent Liaisons at Easter Seals DuPage & Fox Valley, I have experienced many years of not only my own children’s IEP’s, but countless families from our centers.   Here are some strategies that have helped our families feel like a true member of the team and confident that this year’s IEP is a well written plan that will meet their child’s needs.

Prepare for the meeting

1. Make a list of your child’s strengths and needs. Bring it with you to review during the meeting to insure they are covering things that are important to your child’s success in school. Think about and write down strategies that work at home and with your private therapist to share with the staff.
2. Know what the law requires. Section 614 of the Individuals with Disabilities Education Act (IDEA) sets out the process and elements of what needs to be explored to develop and revise and IEP.  States and local school districts add their own policies on top of what is required under the federal law. That being said it doesn’t mean you need to know the letter of the law.   Bottom line… the more you know and understand the easier the process is.
3. Never attend this meeting alone. It’s important that you and your spouse attend if possible.  If not then ask a grandparent or a friend. Their role is to be support for you and another set of ears!  Often at these meetings we can get stuck on something one member of the staff said and miss important information.  Make sure you inform the school that you are bringing someone with.
4. Start the meeting with a positive statement about your child even if you’ve had a difficult period there is ALWAYS something positive to say… he has the best smile, she is caring and kind, he loves other children!
5. When talking to the team, focus on your child’s needs and NOT your wants! Take the I out of IEP. Avoid, I want him to work on, I want her to be in this class, I think she needs….  Rephrase everything. He needs to have these supports in order to be successful. She needs to have sensory break before being expected to do table top activities, as it helps her focus.  The goal of special education is to meet the child’s needs, not the needs of us parents.
6. Placement is not the first decision. This is determined after the team has decided what services and supports are needed.  This is hard; as it is often the first thing you want to know!
7. Trust your gut. If a piece of the IEP doesn’t feel right, and you can’t reach an agreement with the school, make sure it is documented that you do not agree.  Remember, just because you disagree doesn’t mean it will be changed.  The whole team has to agree to change it.  But I always say, ask for the moon and hope for the stars!
   
8. Think about your child’s future! Aim HIGH.  Don’t wait until high school to start planning for what your child can do as an adult.  Every skill your child achieves in elementary school will help him or her be an independent adult.
9. Establish a clear and reasonable communication plan with the school and your child’s teacher. Stick to the plan.  You and the school are partners in your child’s development and learning.
10. Remember the IEP is a fluid document and can be amended at any time by requesting another IEP meeting.

After the IEP meeting

Pat yourself on the back for another successful IEP under your belt.

Easter Seals DuPage & Fox Valley Family Services provide information, education and support that address the concerns and stressors which may accompany having a child with special needs.  Our parent liaisons are highly trained parents of children with special needs.  They provide parents and caregivers with support from the unique perspective of someone “who has been there” in both informal one-on-one and group settings. For more resources and information click here.

Knowledge is Key

By: Amy Liss, Relationship Coordinator

Every month we seem to have a day that brings awareness to a specific disability. For example Friday, March 25, is National Cerebral Palsy Awareness Day encouraging people with cerebral palsy to share the many things they enjoy and can do using the hashtag #CerebralPalsyCan.

While I think these days are great, I personally believe that every day should be Awareness Day. My dream had always been to be an elementary school teacher. Although I may not be teaching in a classroom, my goal is to “teach” every day. Whether I’m giving a speech in the community, giving a tour of our building to someone that hasn’t heard of Easter Seals and its mission, driving up and down our hallways meeting new families, or engaging in conversation with long-time friends, I feel that I am always trying to educate.

For those of you reading this that may not know me, I’m 33 years old and have Spastic Quadriplegic Cerebral Palsy. There are many different types of Cerebral Palsy. I am lucky to be able to speak and have a mind that works pretty well most of the time. 🙂

Next time you come in contact with a person with a disability, here are 5 things I believe you should keep in mind:

1. Just because a person is nonverbal doesn’t mean they don’t understand what you are saying. Treat them normally. Talk to them at a level they understand. Do not talk down to them.
2. Most people with a severe disability need a companion to help them. It is important that you remember to talk to the person and not to their companion. For example, people tend to ask my companion questions instead of directing them towards me. They say “does she like college basketball?” If the question was formed, “do you like college basketball?”I could talk for hours about March Madness.
3. I’m an identical twin and I have a younger sister who is 28. My family did a wonderful job of including me in all family activities. Throughout my life, I’m grateful that I’ve always been accepted and included. Sometimes your special needs child can occupy a lot of your time and that is understandable but it is important to remember that siblings need attention too. Try to spend one-on-one time with each sibling. In my family, we call these “you & me kid days.”
4. Patience is crucial. Sometimes others don’t take the time to get to know people with disabilities because it may take them longer to do things. If you take the time to get to know someone with a disability and include them in your group, you may quickly notice that we’re more alike than different.
5. Be as open as possible. Tell others about you or your child’s disability. That’s how we educate.

You may be surprised at how much YOU can teach!

Amy works as the Relationship Coordinator at Easter Seals DuPage & Fox Valley. Learn more here: http://eastersealsdfvr.org/about.

Future Budget Outlook: Early Intervention

By: Scott Kuczynski, Senior at University of Wisconsin, Political Science major

Read part 1 in this budget series here. In part 2 of this Illinois budget series we take a closer look at the future outlook of the state Early Intervention program.

The ongoing budget impasse has had profound consequences on nonprofits throughout the state of Illinois. Court orders, laws and federal money have funded many state services and programs.  However, 10.6% of the budget currently remains unfunded as the state is not authorized to spend money on these programs without a budget in place.  These unfunded programs primarily involve higher education and human services which include child care and many other grant funded programs.  Up to this point, there’s been a lack of urgency between the two sides in resolving the budget impasse sparking fears that a budget won’t be reached into the spring or much later.

Unfortunately, the prospect of ending the budget impasse early in 2016 looks bleak.  This concern is confirmed by Illinois State Representative Patricia R. Bellock who notes:

“My most important priority in 2016 is to help pass a responsible budget that meets our essential priorities in securing a safety net for the most vulnerable children and families in our community.

Budget negotiations are still ongoing, but I feel it is unlikely that anything will happen until March.  The reality that we work with is we cannot tax our way out or cut our way out of this budget shortfall.  A balanced budget can only be achieved with a responsible combination of new revenue and long overdue reforms and agreement by the leaders of the General Assembly and the Governor.”

The budget stalemate has created an atmosphere of uncertainty in Springfield that has trickled down to individuals in need, human service agencies and communities causing permanent harm in the process.

What can you do?

One of the most important things you can do is to communicate the importance of Early Intervention and reaching a budget agreement to State Representatives (Click here for Legislature Mailing List).

This involves emphasizing the importance of keeping Early Intervention funding at current levels. Previously there were discussions in Springfield of potentially raising the definition of a developmental delay from 30% to 50%.  Increasing the definition of developmental delay would deny thousands of children early intervention services in Illinois.

Early Intervention is a crucial program serving more than 20,000 infants and toddlers from birth to three-years old.  In addition to the developmental benefits of Early Intervention for children, it’s critical that policy makers understand the fiscal benefits the Early Intervention program provides. Potentially restricting eligibility for Early Intervention will escalate the number of children who need more intensive and costly services in the future.  It’s estimated that every $1 spent in Early Intervention saves up to $17 in future costs.  By conveying to our elected officials the importance of Early Intervention services we can help ensure its proper standing in the next budget agreement.

Here’s what you can do:

• Email Governor Rauner through his constituent page and let him know you oppose potential Early Intervention cuts:
  • http://www2.illinois.gov/gov/Pages/ContacttheGovernor.aspx
• Email / fax / call your Illinois General Assembly Legislators to let them know the importance of protecting the Early Intervention program! Don’t know who your rep is? You can look it up online through the state’s board of elections site:
  • http://www.elections.il.gov/districtlocator/addressfinder.aspx
  • Include signature with printed name, address, phone number and legislative district if you know it. Include a picture of your family too; we think your statement will be even more impactful.
• Send a letter to your Legislator.
• Continue to raise awareness on social media using the hashtag #EImatters.

Our commitment

Easter Seals DuPage & Fox Valley remains committed to continuing services.  While we are committed to service continuity, we question our ability to do this if the budget stalemate continues. It’s also important to understand how the budget impasse might be impacting families and human services throughout the state.

Learn more about Easter Seals DuPage & Fox Valley here: https://eastersealsdfvr.org/.

 

New Year, New Budget? Understanding the State’s Budget Stalemate

By: Scott Kuczynski, Senior at University of Wisconsin, Political Science major

Illinois is entering its seventh month without a state budget.  A lack of a budget for this extended period of a time is unprecedented in the state’s history.  The prolonged stalemate has resulted from political and ideological differences between Republican Governor Bruce Rauner and Democrats who hold a supermajority in both chambers of the state legislature.

Negotiations between the lawmakers have made little progress since the July 1, 2015 budget deadline as there is very little middle ground between the two sides.

Representative Patricia R. Bellock

This is confirmed by Illinois State Representative, Patricia R. Bellock, who notes, “Budget negotiations are still ongoing but I feel it is unlikely that anything will happen until March.” There’s concern in the state that the budget impasse could continue well into the spring or not at all as Governor Bruce Rauner and Speaker of the Illinois House, Michael Madigan, have been unable to make progress towards a budget compromise.

Despite the lack of a budget, the state is currently receiving a majority of its funding due to court orders, laws and federal money.  This has funded 89.4% of the total budget, leaving the remaining 10.6% unfunded.  The unfunded percentage primarily consists of higher education and human services such as child care and many other grant funded programs.  This has put enormous strain on nonprofits, many of whom are receiving delayed payments from the state and operating on the premise that they’ll be paid back for human services provided.

Until that time, many nonprofits are forced to make tough decisions which have already resulted in cutting the number of clients they serve, cutting staff, utilizing their full cash reserves, and tapping into lines of credit to continue operations.  In order to avoid further irreparable long-term consequences for human services agencies across Illinois, it’s critical that the state reaches a budget agreement as soon as possible.

Budget Stalemate effects:

The lack of a state budget has created uncertainty and put tremendous stress on nonprofits during the past seven months. United Way of Illinois recently released a survey of human service agencies across Illinois putting the impact of the budget impasse into perspective.  The survey describes the impact on individuals and communities as:

• 85% of agency respondents have cut the number of clients they serve, up from 34% in July.
• 84% of agency respondents have cut programs, most impacting children and working adults.

The survey also reveals the fiscal condition of many human services agencies has deteriorated since the budget impasse, forcing these agencies to take measures to ensure the continuation of operations for their clients:

• 49% of agencies have tapped into their cash reserves
• 26% of agencies have tapped into lines of credit.
  • Taking on a combined $35 million in debt
  • The average credit extension taken on by respondents was $300,000
• 27% of agencies have laid off staff as a result of the budget impasse.

The protracted budget stalemate has caused lasting long-term impacts on human services throughout Illinois. Some agencies have already closed their doors while others are in danger of doing the same the longer the budget impasse endures.  They have continued to operate in an atmosphere of uncertainty over delayed payments and potential cuts to critical programs.

What does this mean for Easter Seals Dupage & Fox Valley?

One of the biggest concerns for Easter Seals DuPage & Fox Valley is the uncertainty in relation to the State Early Intervention program and whether Early Intervention will face small or large cuts in a potential budget.  Early Intervention programs are essential to enhancing the development of children across Illinois and their services are considered 2 ½ times less costly than special education services in preschool and elementary years. Lawmakers need to recognize the importance of the Early Intervention services and reflect its significance in a final budget agreement.  Here’s what you can do:

• Email Governor Rauner through his constituent page and let him know you oppose potential Early Intervention cuts:
  • http://www.illinois.gov/gov/contactus/Pages/default.aspx
• Email/fax/call your Illinois General Assembly Legislators to let them know the importance of protecting the Early Intervention program! Don’t know who your rep is?  You can look it up online through the state’s board of elections site:
  • http://www.elections.il.gov/districtlocator/addressfinder.aspx
  • Include signature with printed name, address, phone number and legislative district if you know it. Include a picture of your family too; we think your statement will be even more impactful.
• Send a letter to your Legislator.
• Continue to raise awareness on social media using the hashtag #EImatters.

Our commitment

Easter Seals DuPage & Fox Valley remains committed to continuing services.  While we are committed to service continuity, we question our ability to do this if the budget stalemate continues. It’s also important to understand how the budget impasse might be impacting families and human services throughout the state.

Stay tuned for Part 2 of this blog series about the budget outlook. Learn more about Easter Seals DuPage & Fox Valley here: https://eastersealsdfvr.org/.

6 Tips for a Smooth Transition Back to School

By: Laura Van Zandt, OTR/L

School is right around the corner if it isn’t already here for many of you. With school starting again, gone are the lazy days of summer and once again the hustle and bustle of getting you kids out the door and getting them to do their homework is resuming. Whether your child is just starting school or is nearing the end of his/her K-12 educational career, here are some tips to help ease the transition back to school. You won’t be able to avoid the business at the beginning of your day, but you can try to ease the morning stress to make the day go smoother.

1. Decide when you have to get up. It will be much easier to decide what time your child needs to go to bed if you know what time they have to get up in the morning. Most experts agree children need between 9 and 10 hours of sleep each night to be at their best. If you know your child must be up at 6 a.m. in order to be ready for school by 7:30 a.m., you would want your child to begin getting ready for bed around 7:30 p.m.

You may want to explain to your child the importance of a good night’s sleep. Getting enough sleep is important for the body to heal itself and allow ourselves to have enough energy to stay awake during the day. It also helps us focus and be less cranky when we have to do tasks we are not particularly interested.

2. Call a family meeting and decide who will be responsible for which tasks each morning. For example, dad will make sure the kids are dressed and their teeth are brushed while mom will take care of breakfast and lunches. Don’t forget to assign these tasks or similar tasks to your children too! This will not only help ease the stress of the morning but it will also help develop their executive function skills which will help serve your child well throughout all grade levels in school. For developmentally appropriate ideas for your children click here.

3. Draw up a schedule or start a family calendar. Designate a spot if possible within your home that is consistent for the family calendar. The family spot can also be used to help make returning back from school easier. If you have young children include photos or illustrations representing the task they need to do. Clipboards are an excellent resource for individual family members to have to list his/her own chores.

Family calendars help to keep things organized.

4. Do what you can the night before. The more you do before you go to bed, the less frantic you are likely to feel in the morning cramming in as much as possible.

• Run the dishes overnight (bonuses this sometimes can save money!) or run the dryer to have clean clothes. Lay out tomorrow’s clothing.
• Maintain a steady supply of quick breakfast foods for this days when it just happens and you are running late. Kid’s growing bodies and developing brains need regular refueling. When kids skip breakfast, they don’t get what they need to perform their best.
• Hang complete outfits together in your closet or put outfits in bins to quickly grab. Keep your children’s matching shirts and pants in the same drawer or on the same hanger so they can find them easily without help.
• Gather everything that you will take with you the next day and assemble them in one place near the door your exit from in the morning.
• Teach your children to get everything ready for the next day before they got to bed. Make lunches, distribute lunch money, and pack backpacks. Take a picture of a completed backpack and attach to a luggage tag so all your child has to do is “match the picture” to make sure everything is included.
• “Match the Picture” is a concept taught by Sarah Ward where the adult can take a picture of the desired end product and assists the child in breaking down the steps to create both a written and visual to match when completing a goal. This concept can be very helpful in eliminating the need to “nag” your child though every step as well as support independence.

5. Ease the transition back from a full day of school to home by allowing your children a break to move and be active. Go for quality, not quantity with after school programs. Your child will benefit most from one or two activities that are fun, reinforce social development, and teach new skills. Remember children need movement. After sitting for an extended period of time during a school day, giving your kids an opportunity to need can be extremely beneficial.

Regular movement has been shown to increase focus in children of all ages. Movement also helps all children regulate (i.e. adjust their energy) and lower rates of behavioral problems. Research shows that physical exercise influences the central dopaminergic, noradrenergic, and serotonergic systems. Together those systems help manage our mood, appetite, sleep, learning, as well as alertness, focus, and motivation.

Ideas for active play might include tossing a ball/back and forth with a peer, playing tag outside, going for a bike ride on the sidewalk, exploring how your body moves by climbing/cartwheeling/summersaulting/etc., or just taking a short walk. Other active play ideas include exploring different textures or drawing with sidewalk chalk. Here is a link to some fantastic indoor play ideas.

6. Set up a time and place for homework. Having a set place to study and complete homework helps send the signal to your children that learning is important. As much as possible, try to make yourself available during homework time….even if that means you still might be cooking dinner or doing the laundry.

One example of a homework station.

Wherever your homework station is in your house and whatever your homework station looks like in your house, make sure you have all the essentials readily available. This will help avoid time robbers (e.g. getting up to find stuff) and help eliminate any headaches over missing supplies. Pinterest has many great ideas for creating a homework station. Right now the bargain bin section in Target also has great supplies for organization. Purchasing a tri-fold poster at Staples is another fantastic idea to eliminate visual clutter and help your child focus.

For more information about Easter Seals DuPage & Fox Valley please visit EasterSealsDFVR.org.

Top Reasons Kids Make Great Gardeners

By: Vanessa Doyle, Lead Teacher in the Lily Garden Child Care Center Infant Room & Horticulture Coordinator

Pop quiz! Which of these would you like your child to improve on?

1. How to make healthy food choices.
2. How to cooperate well with others and engage in teamwork.
3. How to increase their confidence and self-awareness.
4. How to interact and connect with the natural world.

If you agree with one or any of these statements, your child would be a great gardener.

Gardening has been around for so long that people may not realize the positive effects it can have on our children and us. With more processed and highly sugared foods hitting the table, we are further away from where our food comes from than ever before.

Everyone agrees that eating healthy is good. It makes you feel better, gets you a good doctor’s report and prevents disease. But it can be really hard sometimes. After working all day and picking up the kids from school, going to soccer practice, therapy and homework; taking a swing threw the drive-thru seems like the only option available. But this option is causing a worldwide epidemic of obesity and metabolic disease not only in us but also in our children.

So what can we do to turn that around?

We can start by establishing healthy eating habits young. These habits will last a lifetime.

Gardening is a great way to incorporate real fruits and vegetables into your home. It provides a learning opportunity for children to see where their food comes from. School or community gardens also offer an opportunity to interact with a group to practice socialization and teamwork. Once youth are involved in the growing process, they gain a sense of pride and ownership of what they created. This makes them more willing to try new foods and share. Often school can be an overload of sensory input. The garden provides a relaxing environment for everybody. Children can explore their senses by smelling flowers and hearing the sounds of nature around them.

How do I get started?

• Gardeners are great sharers! Ask friends, family and even us here at Easterseals DuPage & Fox Valley. Somebody usually has an extra plant or two to spare or a packet of seeds to share. If you can’t find any, your local nursery can help or you can order seeds online at Rare Seeds.
• Dedicate an area of your yard to be the garden. If you don’t have a plot of land to dedicate to a whole garden, that is okay too. Containers work well and can grow plants such as tomatoes and peppers.
• Make it easy on yourself. If you have never gardened before, it is as simple as putting a seed into the dirt, giving it sunlight and water and watching it grow.

Happy Planting!

Come by and check out our very own school garden grown by the kids in the Lily Garden Child Care Center at Easter Seals DuPage & Fox Valley in Villa Park.

Other Resources:

http://www.letsmove.gov/eat-healthy

http://www.chicagobotanic.org

http://www.earlysprouts.org