Supporting Families’ Mental Health

By: Easterseals DuPage & Fox Valley Social Services Team

Easterseals DuPage & Fox Valley’s family services team provides information, education, and support that address the concerns and stressors that may accompany having a child with a developmental delay or disability. In the past eleven months, these services and support for families were more vital than ever.

As we all gathered as much information about the novel coronavirus (COVID-19) as we could, it still left many unanswered questions, especially for children and caregivers, on how to communicate the potential illness changes. Social Worker Yvonne D. Anderson, LCSW, CADC, CODP II, shared many short stories to introduce resources and bring clarity and comfort to young children while their everyday routines are disrupted.  Our team quickly pulled together resources on wearing masks, social stories for a number of situations, and indoor activity ideas. Many can be found here.

Mental Health Needs

We also helped parents and caregivers of children with disabilities face overwhelming demands and difficult decisions based on the pandemic, stress of remote learning and loss of usual supports. As a recent NPR story shares, “(Lindsey) is one of almost 3 million children in the U.S. who have been diagnosed with a serious emotional or behavioral health condition. When the pandemic forced schools and doctors’ offices closed last spring, it also cut children off from the trained teachers and therapists who understand their needs.”

We know there will continue to be elevated needs and all of our clinicians, parent liaisons and social workers are participating in specialized training to broaden our mental health support services and help keep children and their families emotionally strong.

Clinical Successes

June* is a 9-year-old girl who has been treated for the past four years for anxiety through monthly social work visits.  Monthly visits were adequate to meet her needs and keep her anxiety at a level that did not affect her daily activities.  However, due to continued difficulties with school, it was recommended that June obtain a Neuropsychological evaluation.  The family had just completed the evaluation when the pandemic hit and home quarantine began, turning June’s world upside-down.   (*All children’s name or other identifying information has been updated.)

In March 2020, June began receiving weekly social work services to reduce her feelings of anxiety and to cope with staying home, remote learning and separation from her grandparents. June shares a close relationship with her grandparents and was used to seeing them daily, and suddenly she was not allowed to see them at all. June went to school every day, but her school shut down when quarantine started, and she began remote learning. Remote learning intensified her difficulties at school, and she began to resist attending school. Then June started to have nightmares about her family contracting COVID and dying, resulting in difficulty sleeping.

In April 2020, June increased to social services twice a week, and her treatment focused on reducing her anxiety. The results of her Neuropsychological evaluation were received, and she was diagnosed with dyslexia and severe dyscalculia. June’s parents were assisted in finding tutors for June to help with her reading and math delays and working with her school to adjust her expectations. June attends a private school and did not have access to having an individualized education plan initiated. Her school needed to be educated on these disorders and understand how they affected June’s ability to comprehend math and reading.

June continued to work with social work services twice a week from May through December 2020, working on adjusting to her new diagnoses and how it impacted her school performance, reducing her anxiety, coping with COVID, and being separated from her extended family and friends.

With a lot of hard work, adjusting home and school expectations, developing safe ways to visit her grandparents and implementing new coping strategies, June has reduced her counseling visits back to once a week. Her Easterseals social worker has been a big part of her success. The social worker, school, tutors, and parents, all worked together to advocate for changes and help her apply coping strategies to reduce her anxiety. 

Support for Virtual Learning & Socialization

Additionally, we found ways to assist families struggling to provide socialization and educational supports during their time at home. In one situation, a five-year-old with autism struggled with virtual learning and a new visual schedule helped the family manage school Zoom calls and other activities. By pairing mask wearing with screen time, it helped him get used to wearing a mask in order to successfully return to in-person learning.

Another child, Megan, needed support with safe socialization opportunities during the pandemic. By problem solving and working with the family, Megan was able to schedule virtual play dates, outdoor socially distanced scavenger hunts with neighbors, and more.

Support for Loss, Diagnosis and Care

One of the more difficult but vitally important aspects of caring for a child or adult with disabilities, is planning for care should something happen to a caregiver. During the pandemic, as parents realized their vulnerability in potentially contracting covid-19, we helped with guidance and resources to solidify care plans. While difficult, one set of parents planned for scenarios such as isolation from their seven-year-old medically fragile son if one of them became sick. Having a plan in place, helped ease the anxiety and the unknown of a virus we were all still learning about.

Many of our families have a large network of friends and family to support one another while caring for a loved one with disabilities. The pandemic cut off many of those support systems or diminished the ability to safely gather and care for one another in different households. Then, when a beloved grandparent ended up in the hospital for one of our families, they needed coping strategies to help with the inability to see their family member and more support after his passing. We were able to create new rituals for visiting virtually, help with saying goodbye and finding meaning in this difficult loss. These are tough concepts for any child and hard to understand when these visits and goodbye is virtual.

While a loss of a family member is difficult to process for all, we understand the loss of a job can also bring similar feelings of grief and anxiety to a family. As the primary wage earner in his family, when Josh was fired from his job, he felt lost and overwhelmed on how to help his family’s many needs. With the help of the social work team at Easterseals, he was connected with various resources from rent assistance, food pantries and free internet service to enable his children to attend school virtually.

One resource that has been helpful for families is Internet Essentials from Comcast, a low-cost, high-speed internet at home. During the stay-at-home order, a home Internet connection was more essential than ever for families. Comcast provides the Internet service and computers along with free training for the family. Families can get approved if they qualify for programs like the National School Lunch Program, housing assistance, Medicaid, SNAP, SSI and others. Learn more at: https://www.internetessentials.com/apply.

More than ever, we are reminded no one is truly alone at Easterseals. We fostered connections between families and found virtual opportunities to connect. We help reduce the many difficult child care decisions in a pandemic and find solutions that fit each family’s unique needs. Visit eastersealsdfvr.org or stay tuned to our Facebook page for more resources, parenting webinars and support in transitioning children back into school.

Remote Learning Seating Tips

By Laura Donatello, Physical Therapist and Positioning & Mobility Clinic Coordinator

As school districts return to remote instruction (many for the rest of the school year), the learning environment at home should be revisited. As an observer of your child’s school day you may notice when he/she needs a break or help focusing. Their seating position has a large impact on their ability to focus! You may have to experiment with seating positions to find the best productive space for their child.

Ideally, you want to help create a workspace conducive to good posture and free of distractions. The pictures below demonstrates what good posture looks like in an at-home learning environment. As you can see, there are multiple ways to position an at-home learning environment!

Seating Positions

1. Laying in prone on your stomach is a great way stretch your trunk and hips after sitting in a chair. You can put a small pillow or rolled up towel under your feet to relax your back.

2. Sitting on a peanut ball is another great alternative to sitting in a chair. The ball will provide proprioceptive feedback to assist with increasing arousal levels. Be sure your child’s feet are flat on the floor. It might be easier for your child’s feet to touch the floor with a peanut ball versus a round exercise ball because of the shape. Put something under the computer to be at eye level. A physical therapist can help identify the right size ball for your child. Also, a general tip is to measure the distance from the child’s armpit to the middle finger tip. This measurement will give you a decent estimate of what the diameter of your ball should be.

3. Tall kneel and half kneel are different floor positions which can be balance challengers. Encourage your child to keep their stomach away from the support surface. You could use a small towel or move the desk slightly away from their trunk to strengthen their core!

4. Using the wall is an easy tactile cue to encourage your child to sit with a flat back. If you do not have a small bench you can use a box. Your child can sit in pretzel style sitting while using the wall as support.

5. If you have an adult size desk chair, position blankets to make it child size! Watch for a couple minutes to see if your child is comfortable. If you notice your child leaning to the side, you can also put a rolled-up towel or blanket by their hip. Make sure their feet are supported with hips and knees at a 90 degree angle. If you notice your child leaning back, you might need another blanket behind their back. If you notice their trunk starts to come past their hips, you might need to take a blanket away. If their knees are higher than their hips, the support surface under their feet might be too big. If their knees are lower than their hips, you might need a higher footrest.

In this picture the height of the desk is set as if Henry were talking to his teacher and looking at the camera. If your child is watching something on the screen, you would need something else under the computer such as a thin box to keep their eyes level.

6. Another example of what a blanket can do for posture! In this example the blanket is rolled long ways and wrapped around Henry’s back to provide total trunk support.

Foam Roller Stretch

This exercise is one of the best activities you and your child can do after a long day at the computer! Grab a foam roller or roll up 1-2 towels. Lay on your back with your arms stretched out, your palms facing up, and your feet flat on the ground. Keeping your arms on the ground, bring your hands in line with your shoulders. If you notice your back start to arch bring your hands down. Stay here for the length of 1 song per day to stretch your pectoralis muscles!

A special thank you to Henry for being our model!

Alternate Seating Options & Focus Ideas

Occupational Therapist, Laura Harmasch, OTR/L, shares some additional strategies to help children who need extra help focusing! Headphones help and our recent blog post, covers how to help children with hearing aids use headphones and hear the best during remote learning sessions. Also creating a space with a trifold display board around the computer can help some children if they are easily distracted, have siblings playing or learning nearby to tune out all the other “noise” or activity around them.

Wobble stools may provide a good option for children who like to move around some when learning or working on assignments. I only recommend wobble stools or balls for kids with good trunk strength. Children with low muscle tone will fatigue too quickly using them, which may further limit their attention. A sit and move cushion is also a good option for children who need movement and have good trunk strength.

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Additional Resources

Caring for a child during this pandemic is difficult, and it can be hard to know the proper supports for child development. Read our resources, find support and more here: https://www.easterseals.com/dfv/explore-resources/for-caregivers/covid-19.html.

Also if you need assistance documenting your child’s learning progress or needs, Matt Cohen and Associates, a law firm specializing in special education, disability rights, and school-related issues, provided a number of resources on our blog here.

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.

Prepare Your Child for Kindergarten During the Covid-19 Pandemic

By: Katie Kwiatek, Pre-Kindergarten Teacher at The Lily Garden Child Care

Will your child be five years old before September 1st, 2020? If so, get ready to send them off to kindergarten this Fall!

But, wait!

Since schools and day cares have closed, I’m afraid my child will have a tough time transitioning back to a school setting. What skills do they need in order to be kindergarten ready? There are so many new procedures for children to learn too! How can I help?!

Here’s what you can do to prepare your little one!

Create a daily schedule that mirrors the average school day.

It can be a rough transition from quarantine life to a school schedule. It’s so easy to fall in to the habit of staying in pajamas all day, being a couch potato, eating right when you feel hungry, etc. Once your child goes back to school, they will have to follow a schedule of: when to eat, when to play outside, when to sit still, when to be silly, and when to be serious. For everybody’s sake, create a structured schedule for the typical work week and keep weekends open and fun!

To mirror your child’s average school day, contact the teacher! They’ll be more than happy to send you an outline of a typical day. Make sure to keep your schedule consistent! Children need structure and consistency! They like to know what comes next and what is expected of them. If your child tends to feel nervous/anxious, having a consistent schedule will help ease them. Let your child know before you implement a new schedule- explain the new routine, make a chart together! Here is a resource for parents about creating structure and rules.

For all children’s success in this current pandemic, practice wearing masks at home and getting comfortable with wearing them for extended amounts of time. Practice frequent, good hand washing and reminders to limit touching of their face. We know this is easier said than done! Check back on our blog and social media for upcoming tips and resources around mask/face coverings and remote learning.

This is a challenging time for families and it is hard to know what the school environment and year will be like for your child. With some careful preparations and conversations, your child can have success. By sharing a positive attitude surrounding school, the new rules and the big change to Kindergarten for your child, it will help him/her feel ready to learn and ease some anxiety.

Work on social and emotional skills at home. 

Social and emotional skills are a key ingredient for kindergarten readiness. Your child needs to learn how to express and cope with their emotions appropriately and form healthy relationships with their peers and grown-ups. How can you work on social and emotional skills at home? Its very simple! Do your best to keep your own emotions in check and talk, talk, TALK!

Remember, your child is always observing your behavior. Think out loud, show them your thought process when you’re upset. When your child is upset, describe their face & body language, label the emotion, and provide a solution,  “I see your body is tense and your eyebrows are drawn. You are frustrated. Lets take 2 deep breaths and do 3 hand squeezes together.”  While reading a book or watching a TV show, describe the characters and ask questions, “That man is yelling at that girl and his face is red. He is very angry. How do you think she feels?”

Here is a resource about building social & emotional skills at home:
https://www.naeyc.org/our-work/families/building-social-emotional-skills-at-home

Click this link for a list of books about emotions:
https://www.pre-kpages.com/books-emotions-preschool/

Encourage your child to be independent! 

Being independent and having self-help skills is another key ingredient for kindergarten readiness. Your child will likely be in a classroom with over 20 students and 1 teacher and keeping distance between each other. This requires your child to be as independent as possible.

 

Here is a resource about self-help skills:
https://childdevelopment.com.au/areas-of-concern/self-care/self-care-skills/

Click this link for the self-help development chart:
https://childdevelopment.com.au/resources/child-development-charts/self-care-developmental-chart/

To promote independence and improve self-help skills at home, work on these tasks:

• Picking out clothes for the day

• Getting undressed and dressed independently

• Putting dirty clothes in a laundry basket

• Brushing teeth & hair

• Take off & put on shoes

• Put on a jacket and zip/button it up

• 100% bathroom independent (potty trained & wipe independently)

• Properly wash hands

• Hang up a jacket & a backpack on a hook

Allow boredom 

Why do you want your child to be bored? From boredom comes imagination and creativity! Its essential for every child to have a lively imagination, to think outside of the box, and to express themselves creatively. They’ll be able to carry this trait through school to adulthood. Keep your child’s imagination alive! Provide them with art materials and encourage open-ended art, have them express themselves through music with pots & pans (put on headphones if you’re working from home 😉), encourage them to create puppets and put on a puppet show! Even chores can provide great lessons in executive functioning.

Here is a parent resource to fire up your child’s imagination:
https://www.parenting.com/activities/kids/10-easy-ways-to-fire-your-childs-imagination-21354373/

Make learning fun!

Each kindergarten has different standards and academic requirements prior to starting. Contact your local school district to get more information. Typically, your child should be able to copy upper & lowercase letters, recognize some-most letters, know numbers 1-10, classify objects by shape & size, and be able to use scissors & glue with ease.

Here is a resource of more skills your child should know:
https://www.scholastic.com/parents/school-success/school-life/grade-by-grade/preparing-kindergarten.html

With many kindergarten screenings cancelled this summer, you can use the Easterseals FREE child development screening tool, the Ages & Stages Questionnaire, to help measure and keep track of your child’s growth and development. This is a great tool to provide your teacher and child’s doctor on areas they may need assistance to grow.

How to make learning fun?

Create a pretend classroom for your child to play teacher and you play student! This area can serve as your child’s remote learning area too. This is an opportunity to grow your child’s love of learning. Give them assorted classroom materials: clipboards, pencils, paper, books, alphabet & number cards (use whatever you can find in the house or find free printables online). Are there certain letters, numbers, or shapes they have trouble with? Don’t focus so much on worksheets- instead find fun hands-on activities!

Click this link for letter activities:
https://www.pre-kpages.com/alphabet/
Click this link for number games & activities:
https://www.pre-kpages.com/counting-games-activities-preschoolers/
Click this link for shape activities:
https://www.pre-kpages.com/shapes-activities-preschoolers/

We know how agonizing the decisions for the next school year are for your family. If your child receives school therapy services, is unable to wear a mask, or if remote learning is not an option for your family, it can feel especially challenging. Whatever decision you make, we are here to support you. Contact our Social Services team for support and resources at socialservices@eastersealsdfvr.org. We will have more information on our blog around these important subjects in the months ahead.

We remain committed to providing the highest quality services to improve the lives of children and those who love and care for them. We understand that a child’s needs to succeed look different for each family. For over 75 years, our clinical team has provided individualized therapy plans to best achieve a child’s goals and support healthy families. This pandemic only solidifies our commitment. Let us know how we can help you in the comments.

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

March is Cerebral Palsy Awareness Month

By: Jack McGraw, Easterseals DuPage & Fox Valley client

While many wear green on St. Patrick’s Day, you can wear green all month long to honor Cerebral Palsy Awareness Month. Why green? The color was chosen to reflect youthfulness and new growth, as well as hope for advancements in treatment and acceptance.

Cerebral Palsy is a disability that is caused by damage to the brain before or at birth. It mostly affects movement and fine motor skills but can have a large range of severity for children. Some children with cerebral palsy can walk or talk, while some may use a wheelchair or assistive technology device to speak like me.

Honestly, living life with a disability can be very challenging but I don’t let it stop me from having an awesome life! I have a lot of friends, a great family and have been a successful student. I graduated from St. Charles North High School in 2017 and am now a proud honors student at Elgin Community College. My communication device uses eye gaze technology and helps me type up essays and lecture notes.

I also love sports. I really, really love sports. While my disability has kept me from participating on teams with my friends, it hasn’t stopped me from being a huge fan. I had the privilege  of being a team manager for football, basketball and volleyball while in school and those were very special experiences. I really felt like a part of the team and got close to some of my teammates.

I have been going to Easterseals since I was a little boy. I have done Physical, Occupational and Speech therapies. Easter Seals has helped me to be as independent as I can be and my therapists have always listened to me and asked me what I want to be working towards in therapy. They have been a great support to me and an asset in my life.

People with disabilities aren’t really very different from people that don’t have disabilities. We enjoy a lot of the same things and want to be treated fairly like everyone else! Having a disability is hard, but I haven’t let it stop me yet! Life is good!

Editor’s Note: Easterseals DuPage & Fox Valley offers many resources for children with spastic and non-spastic cerebral palsy and their families including physical therapy, occupation therapy, speech-language therapy, assistive technology, inclusive day care and parent-to-parent support.

Treatments and therapies can benefit a child with cerebral palsy by helping him or her gain the strength and mobility needed to take first steps, speak first words and maximize their independence.

For more information on cerebral palsy and therapy service at Easterseals DuPage & Fox Valley, visit http://www.easterseals.com/dfv/our-programs/cerebralpalsy.html.

How Physical Therapy Supports Children with Down Syndrome

By: Joanne Pygon, PT, MS, PCS

Physical therapy plays a crucial role in helping a child who is diagnosed with Down syndrome (DS) reach their highest potential.  What that therapy looks like through a child’s life changes as he/she transitions from newborn to teenager.  Hypotonia, weakness, cardiac and respiratory issues are some of the challenges a PT will address.

0 – 24 months:  The physical therapist (PT) is one of the first healthcare professionals to work with a parent and their child to help build a strong foundation of strength and movement.  Depending on the medical complications a child faces, the PT works regularly with the child to build strong muscles so he/she doesn’t develop compensation that can affect their abilities later.

The parents or caregivers will have activities to work on daily to help their child reach gross motor milestones.  The child may need special braces for their feet to improve alignment so that muscles can maintain length to function efficiently.

Compression garments such as a SPIO, Benik or an abdominal binder, may be considered to aide postural alignment and respiratory function.  Aquatic therapy can be beneficial if a child enjoys the water.  This gives him/her an opportunity to be challenged in new and fun ways, while also building strong swimming skills and an enjoyment of water for future exercising.

2 years – 5 years:  During the preschool years physical therapy continues to address higher level gross motor skills.  It may be appropriate for a child to be involved in group therapy sessions where peers motivate each other, along with providing social and communication opportunities.

Easterseals has groups like Mighty Movers, Build Your Muscles, Build Your Brain (TAAP), Get in the Game and more that enhance a child’s gross-motor skills. Most children start in a school program upon turning 3 years old.  PT is provided in the school to address issues that interfere with academic success.  This might be enough therapy for a child or the parent may choose to continue private therapy depending on the child’s needs and goals.  If the child has orthotics (foot braces), then a PT should be following the child periodically to check for fit and continued need.  During this time, families can explore park district programs in their area, especially gymnastics classes or swimming in order to build balance, strength and coordination.

5 – 10 years:  Throughout these years, a child involved in community-based programs could seek PT consultations.  Some children may enjoy a summer PT group to build strength and confidence such as our rock climbing group.  Biking can also be a great opportunity for fitness and socializing.  There are several “learn to bike” programs in the community and a PT can help a child develop this skill.  Many children become involved in swimming and this becomes their life long fitness.

Teenage years:  Encourage physical fitness, which is important for any teenager or young adult. Hopefully as the child faces the challenges of being a teenager, they have confidence in their abilities and can continue to be a part of a sport community, like a swim team, running group, or special rec team.  The child may need to check in with their PT a bit more to update home programs, as growth may affect their posture.  While braces may not be needed anymore, foot inserts may be necessary to support his/her feet in the best possible position.

 

Most importantly, set high expectations and enjoy all the gifts children bring to families!

For more information on our Down Syndrome services, visit http://www.easterseals.com/dfv/our-programs/downsyndrome.html.  To get started or learn more, call us at 630.282.2022.

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

Comparing School & Clinic Speech Services

By: Valerie Heneghan, M.A. CCC-SLP/L
Speech Department Manager

 As a speech-language pathologist who has worked both in school-based and clinical settings, I am often asked questions about the difference between these two settings. Overall, they work together! I’ll explain more.

School-based setting

Qualifications

Photo by Pixabay on Pexels.com

Schools have entrance and exit criteria for qualifying children for speech services derived by their district or state. Using formal assessment protocols, children may need to demonstrate a deficit of a pre-set standard deviation before they are eligible for services.  There is usually a wide range of differences from district to district, so it is difficult to predict qualification criteria prior to the evaluation.

Services:

School services can treat children with language, articulation, pragmatic (i.e., social), and voice/fluency disorders to make educational progress. These services may be delivered in a variety of ways including one-on-one, group setting, or push-in to the classroom.

A Clinic-based setting (like at Easterseals DuPage & Fox Valley)

Qualifications

Clinics typically do not have pre-set qualification criteria as they are not regulated by state or governing bodies.  Clinicians will qualify children for services based on clinical judgement using both formal and informal assessment procedures. Coverage for these services however may be dependent on the child’s insurance and/or may be an out of pocket expense.

Services

Clinics may be able to provide more specialized, intensive, or varied skilled services based on functional and/or medical necessity. Often these services are delivered on a one-on-one setting in the clinic, however additional options may be available.

Easterseals

At Easterseals DuPage & Fox Valley , we offer a variety of service delivery models including: one-on-one therapy, community base therapy (groups), co-treatment with multiple services, tele-therapy services in addition to providing services in our clinic, homes, and through our daycare setting.

We deliver a wide range of speech-language services cultivated by upholding ongoing continued education/ certifications, state of the art equipment, and collaboration with multidisciplinary teams.  Our speech-language services work to strengthen children’s communication and feeding skills so that they can participate fully in daily activities and achieve success.

Our speech-language therapy services address functional communication, language expression/comprehension, pragmatics, speech-sound production, voice, fluency, oral motor, and feeding skills. Areas of specialization include but are not limited to the following:

1. The Voice Box: A Motor Speech Lab, focuses on improving articulation, voice and resonance skills through cutting edge and innovative technology.
2. Oralfacial Myology addresses disorders of the muscles and functions of the mouth and face. These may address tongue thrust, dental malocclusions, breathing, speech, swallowing, and chewing.
3. Feeding services seek to ensure safety and adequate consumption of a varied diet. Treatment may address feeding issues related towards chronic diseases or syndromes, disorders of oral motor structure or development, growth disorders, failure to thrive or obesity, tube feedings, food allergies and sensitivities, gastrointestinal disorders, neurological conditions, constipation, diarrhea, sensory-related or Autism Spectrum Disorder-related feeding difficulties.

Our services continue to expand to meet the needs of the current populations that we serve.  Additional initiatives that we have been growing this year include: tongue/lip ties, auditory processing, and Spell-Links for improving spelling and reading comprehension.

I see value in both school and clinical settings!  I often encourage families that I work with, to consider both options based on the needs of the child.  Our therapists work with other disciplines like our Occupational Therapy, Physical Therapy, Audiology or Nutrition teams. We make sure to consult and involve all medical professionals and school therapists that work with a child, to  review goals and achieve maximal outcomes. To learn more about Speech-Language services at Easterseals DuPage & Fox Valley visit http://www.easterseals.com/dfv/our-programs/medical-rehabilitation/speech-language-therapy.html.

Routines and Why They Can Help

By: Laura Van Zandt, MS, OTR/L

Routines are very important for all children, but they can be particularly important for children with developmental delays. Routines help provide a sense of certainty and security for children by offering them a predictable pattern that allows them to know what to expect, which will result in less frustration as well as fewer tantrums or meltdowns.

Certain routines are almost universal, such as morning and bedtime routines, but others may exist for specific circumstances or stages of life, such as your family’s weekend morning or school or summer routine.

A great place to start a routine is having a set bedtime. The American Academy of Pediatrics recommends that children ages 3-5 should get 10-13 hours of sleep a day (including naps) and children ages 6-12 should get 9-12 hours of sleep each night. The benefits of getting enough sleep are numerous and include mental/physical health, attention, memory, learning, behavior, and more. The AAP also recommends no screen time 30 minutes prior to bed, no electronics in children’s bedrooms, and having a set bedtime routine.

Setting up a bedtime routine:

Photo from Take Three Photography

Bedtime routines can be anything you want them to be, as long as they are familiar and predictable. For my infant son, he takes a bath every other day. After his bath (or mom and dad quiet playtime on non-bath days), he gets a nice massage and we read a couple goodnight books. When he shows us signs of being tired, we turn off the bedside lamp, swaddle, and turn on the white noise machine.

This routine is something I hope to keep as he gets older. For an older child, you can do a similar routine but you will need to add in time for personal hygiene and perhaps next day activities such as pick out your clothes, pack your backpack, etc. You can use a similar routine for naps, except they would just be shorter.

Aside from bedtime, morning routines, can also be beneficial. Some families have different weekday and weekend morning routines, but other children may need to have one routine that stays the same regardless of the day.

Mealtime can also present an important routine. An easy place to start is to try to have meals around the same time each day. I know this isn’t always possible- but getting as close to a specific time each day can be beneficial and having everyone sit together to eat.

Additionally, having chores to do in family routines helps children develop a sense of responsibility and some basic skills, like the ability to manage time. These are skills children can use for later in life that you can begin at a young age. One great example is singing the “clean up” song when it’s time to finish an activity and move onto something different.

“Clean up clean up
everybody everywhere.
Clean up clean up
everybody do your share.

Clean up clean up
everybody everywhere.
Clean up clean up
everybody do your share.”

Routines can also be great for teaching personal hygiene. Ever heard a parent sing the ABC song while their child washes their hands? This is just one great example.

Here are some tips if you are looking to introduce routines into your daily life:

1. Only change one part of the day at a time.

2. Come up with your basic non-negotiables and then give your children some                    choices (bedtime stories together or separate?).

3. Make a poster with the routine, including photos in the right order, to allow for              self-monitoring. In a good routine, everyone understands their roles, knows what              they need to do and sees their roles as reasonable and fair.

4. Follow the same routine every single day for at least one month, after which it will         become habit and your older kids should be able to keep themselves on schedule for         the easy routines.

Establishing routines has lots of great benefits that can help both you and your child develop scheduling abilities, and increase the likelihood that your family will have a smooth day.

For more information on Easterseals DuPage & Fox Valley, visit eastersealsdfvr.org.