A Therapist’s Review on The Rabbit Listened

By: Natalie Donald, Social Worker

It’s Read Across America Week! This week, led by the National Education Association (NEA) and guided by a committee of educators, is the nation’s largest celebration of reading. This year-round program focuses on motivating children and teens to read through events, partnerships, and reading resources that are about everyone, for everyone.

Readers who feel included, recognized, and a part of the world are engaged readers. As we celebrate Read Across America, we invite you to read one of my favorite books, The Rabbit Listened, or our other recommended books to start conversations about disability and inclusion.

The Story

When I first discovered The Rabbit Listened, it moved me to the point of promptly buying 10 copies for friends and family in my life (child and adult alike). At its core, it is a picture book about empathy and kindness, a skill everyone needs, especially when others in your life need support.

Taylor, the main character, is a child who has something unexpected and challenging happen. With that challenge comes confusing feelings that Taylor doesn’t know what to do with. Many animals like the bear, the elephant, and the ostrich come along and try to help Taylor feel better, but nothing seems to help. Eventually, the rabbit comes along and gives Taylor exactly what he needs. It’s a simple yet profound message about choosing to be “with” someone in their pain. It’s a story that resonates with grief and loss, moments of dysregulation, and those days when you feel like nothing is going your way.

The Lesson

The story provides a beautiful lesson on one of the best things we can do for others. Some call it co-regulation, attunement, affect matching, or mirroring. Others call it listening with warmth, care, and calm. It’s uncomfortable to resist the urge to fix a problem and instead choose to sit with someone and listen.

This connection is the chief thing that calms down the nervous system. It’s what makes someone feel seen, heard, and understood (and isn’t that what we all want after all?). It makes our bodies and brains feel like we can take a deep breath, that we’re not alone, and that we don’t have to feel bad for the way we feel. Sometimes we just have to stop what we are doing, get to the child’s level, and give them our full, undivided “I’m not going anywhere” attention and choose to ride the wave with them until they feel back to themselves again.

In the book, we see that Taylor’s brain and nervous system weren’t ready yet for laughter, or to try again, or feel better. It’s a reminder to all of us (*hand raise- myself included) that we must try to meet others in their pain before we can help them move on to feeling something new. This is true empathy. And again, this connection is the fastest way to get kids (and adults) back into their “thinking brains.” Once the thinking brain is back online, we can then access coping strategies like the animals in the story offer to Taylor.

But remember, coping strategies are not one-size-fits-all. Today one strategy might work great, and by next week… it might not work at all. Some days, I need a good laugh with my husband to shake off the day. Some days, I need to scream into a pillow or need movement to discharge those stressful feelings in my body. Other days, I need a bubble bath or some alone time to myself to reset. And for all of us, there are just those days when NOTHING seems to work at all and on those days, we have to be gentle with ourselves and others. Maybe those are the days we need our own rabbit.

The Lesson in Practice

So with all of that, my challenge for you is to find someone in your life and BE THEIR RABBIT. Being a human is hard sometimes and one of the best gifts you can give to someone is your presence. RESIST THE URGE TO FIX.

Here are some ways to to increase connection when someone is in a challenging moment: (This works for both adults and children. Sometimes you have to repeat multiple times or in different ways.)

• Sitting with someone
• Mirroring their body language
• Offering a hug

Saying something like the statements below (with genuineness or as much care as you can offer in the moment):

• “I am right here with you”
• “I hear you”
• “I’m not going anywhere”
• “I’m listening”
• “You are not alone”
• “I don’t know what to say, but I’m here”
• “I’m here for you now and I will be here whenever you’re ready to share”
• “Take as much time as you need
• “I have felt that way before too (share example)”
• “I think everyone feels that way sometimes”
• “I haven’t been through what you are going through but I imagine that it’s so hard”

*REMEMBER: Give yourself LOTS of grace with this practice. This is hard, and we are all still learning. And remember, even when you mess up, making a relational repair is just as important and powerful!

Social Services at Easterseals

The Easterseals’ Social Services team strives to provide children and families with the mental health support they need to help in these unexpected and challenging moments. We strive to help caregivers and children experience more joyful interactions through attunement and connection. For more information on our services you can contact us at socialservices@eastersealsdfvr.org.

2021 Holiday Gift Guide

By: Citlaly Gonzalez Psy.D Clinical Psychologist

Winter brings chillier temperatures, twinkling lights, extra family time and the opportunity for holiday shopping and gift-giving. There are many gift guides out there. Big City Readers put together this one that includes toys to support learning and development, and sensory play and of course books!  There’s this one by Buzzfeed for kids with endless energy. Easterseals DuPage & Fox Valley offers something unique- a holiday gift guide carefully curated with the needs of our families in mind and offered through the lens of mental health and wellness for the whole family.

Many of the links included in this guide take you to Amazon, so add Easterseals DuPage & Fox Valley as your selected charity through smile.amazon.com and get ready to shop!

Family Time at Home

The old adage your presence is the best present is never truer than during the holidays. This is a great time to think of ways to spend time together during the winter months and look toward ways to create memories throughout the year. Board games bring the family together and there are many great options for even the youngest children. Worried about the meltdowns that happen when a child is still learning to lose graciously? Stick with cooperative games such as those by Peaceable Kingdom. The Race to the Treasure is in heavy rotation in the Social Services department as is Monkey Around, a non-competitive game that includes gross motor play, imitation, vocabulary, and social-emotional skills through a card game that prompts players to do movements together.

There’s no rule that therapy games have to stay in the therapy room. Consider adding some Social Services classics to your own toybox at home and normalize talking about mental health. These Kimochis provide a cute way to talk about feelings and Create a Story cards support sequencing and story-telling. To support calm feelings this card deck introduces mindfulness while this expandable breathing ball brings deep breathing to life.

Winter is long so think of games that keep you moving indoors. Painter’s tape in the multi-color pack is great for creating homemade obstacle courses with little equipment. Add in stepping stones, wobble boards, a figure-eight balance beam, or even tunnels and ball pits to level up the fun indoors.

The Tricky Spots

Not every routine at home brings smiles to children and caregivers. But what if we could provide some tools to support these “tricky spots?” What if we could identify toys that we could integrate into daily routines and incorporate them in ways that help? Think of what part of the day feels challenging and add in some gifts to help make those tasks feel more exciting or run more smoothly.

Bath-time: Put together a Bath bin to make bath time more appealing. “Time for bath” and “Time to choose a bath toy” have a different ring to them. Consider bath crayons, bath paint, bath bombs, bath confetti, color drops, glow-sticks, –any of which would make great stocking stuffers, or you can choose something like this interactive set that lights up and has music parts or a bath-time basketball hoop.

Bedtime: Help create a calm environment and support a healthy bedtime routine with these recommendations that might make your child look forward to bedtime! Create a soothing and distraction-free environment with this bed tent or try a light projector such as this one that creates dinosaur images on the ceiling, this huggable turtle, or this brave bear with his flashlight and book.

Mealtimes: Take some of the struggles out of mealtimes with some of these fun gifts. Which food to try next? Depends on the spinner or the order of this path or these fun plates that are sure to make meals fun.  You can also help promote self-help skills and independence with gifts that help your child participate in cooking –not to mention the gift of time and memories made together in the kitchen. Both of these wooden knife and wooden knife set are safe for most novice chefs whereas this one might be more appropriate for children who are ready to use a real knife that is still child-safe.

The classics

It would be remiss to make a holiday gift guide without mentioning “the classics” –open-ended toys, art supplies, and books. Here are some Easterseals Dupage & Fox Valley favorites:

Must-Have-Toys: Dolls and dollhouses, blocks, and play food are the play trifecta. If you have these, your play kit is complete! Dolls are great for both boys and girls and help foster pretend play, teach routines, and promote caregiving. Melissa & Doug has a beautiful wooden one while Woodzies offers an option at a lower price point. (Hint: Woodzies have a lot of other settings you can add like the school set to help your child share and tell you about their day). There are many options for play food, with Melissa & Doug offering a wide variety of beautiful sets, some that invite “cutting” or with Velcro pieces to assemble. Speaking of building, blocks are always a hit! Whether it’s Legos, wooden blocks, or a fun option like these, blocks are a great open-ended toy that provides endless possibilities for creative play.

Art: Art provides not only the opportunity to create but also to connect and express thoughts, feelings, and experiences. Some favorites include Crayola Slick Sticks which provide rich color with minimal pressure, perfect for toddler hands and those with motor challenges and Sharing journals such as this one provide a great way to connect with your children through art.

Books: Every book has its perks and particular uses and reasons to recommend it. Poke-a-dot books help support pointing and the Indestructible book series is perfect for children still learning to be gentle with books. Two of my all-time favorite books are The Rabbit Listened which reminds us to stop and listen to what children really need and All the Ways to Be Smart which celebrates the many ways kids learn, play, and explore. Remember, books are not just bound paper, they’re the promise of time spent together bonding and reading with your child.

We have a wonderful library at Easterseals and a carefully curated book list. Ask your therapist for recommendations or contact the Social Services Team. Two favorite resources for book recommendations are Miss Beth and her team at Big City Readers and Kido.

Let’s not forget the caregiver

While the focus of the holidays is often on the children, let’s not forget the gift of a healthy, happy, and well-taken care of parent. I recently saw a post of Mothercould (highly recommend for ideas of activities and sensory play!) where Myriam, the blogger, shared the idea of a gift basket she made for herself for self-care following the birth of her youngest daughter. What an amazing idea! So, this last recommendation is to put together some of your own favorites. Your favorite snacks, gift cards for your favorite store (who doesn’t love a solo trip to Target?), and a note to remember to take care of yourself this holiday season and into the new year.

The best gift for your child . . .

Of course, the focus of any gift should be the recipient and what brings them joy. You are the expert on your child and what they like most! Grant yourself the permission to fill their stocking with the Guaranteed Wins! Confession: my child’s stocking includes a bottle of eczema cream because he loves this part of our nightly routine and a wooden McDonalds food set –a Frankenmixture of trendy wooden toys and the food parents don’t always want to admit their kids love. Those items aren’t likely to be found on anyone else’s gift guide, but they are things I know will bring a smile to his face and will be immediately put to use, and that makes them good gifts!

To determine the best gifts for your child, think of the parts of your day where you could use some support and choose a gift that will grant it. Reflect on your favorite routines and memories with your child and consider ways to incorporate these into your gift. Consider how the gifts you select will be used in a way that supports your family’s health and happiness and above all the time you share together.

Amazon Wishlists

While you complete your holiday shopping, don’t forget to checkout at smile.amazon.com with Easterseals DuPage & Fox Valley as your selected charity. You can also take a look at our wishlists for therapist and teacher requested items to send to our centers. Both efforts on Amazon can provide year-round support of our services and programs. The featured items make great developmental toys and gift ideas for children of all ages too. Thank you for supporting us this holiday!

• Villa Park Wishlist
  • Features pretend play toys, art supplies, bubbles and baby and toddler toys
• Elgin Wishlist
  • Features books, movement and baby toys for use in therapy
• Naperville Wishlist
  • Features board games and sensory materials to use in therapy
• Lily Garden Wishlist
  • Features kinetic sand, paint and playdoh supplies, fidget toys and more for our infant, toddler, preschool, and pre-k classrooms.

Keeping Children with Disabilities Safe in a Digital World

By: Yvonne D. Anderson, LCSW, CADC, CODP II

All parents want to protect their children. And all children are vulnerable online, whether they’re using email or chatting on social media sites. When your child has a disability or developmental delay, those protective instincts switch into high gear. Identifying potential threats online is more challenging than, for instance, spotting a danger on the playground. Additionally, many children with disabilities struggle with reading social cues, managing emotions/ behavior, and making judgment calls about others. As a result, they are at a higher risk for cyberbullying and online victimization. As a parent or caregiver, you are your child’s first line of defense. Use the following guidelines to navigate the online world and keep your child safe.

Make your home network safe.

Avoidance is the best policy when it comes to sexual content, violent images, online predators, malware, and cyberbullying on the Internet.

• Increase your security. Use updated virus protection and other safety measures, such as firewalls, to protect your computer from hackers and other cyberattacks.
• Make it public. Keep smart phones, iPads, and computers in shared places where it’s easy for you to monitor online behavior.
• Filter content. Install filters to block unapproved websites and images.
• Set up parental controls. Limits can be set in multiple ways, such as through your internet or mobile service provider, directly on the device itself, and through site-specific services, including YouTube, Netflix, and Facebook.
• Use child-friendly browsers. Some browsers are designed specifically to allow young Internet users to explore and learn without coming across offensive or dangerous content.
• Review the browsing history regularly.
• Disable location-tagging. A GPS-enabled smartphone or computer can reveal your child’s location through online posts and uploaded photos.

Photo by Dzenina Lukac on Pexels.com

Teach your child how to behave online.

Educating your child about appropriate online behavior is vital if you want to keep her safe no matter where she accesses the Internet.

• Establish ground rules. Identify what is OK to do online and what activities are prohibited. When it comes to content, use the same guidelines that you employ for television viewing: if they can’t watch it on TV, they shouldn’t look it up online either.
• Teach your child that information shared on the Internet becomes and stays public forever.
• Review information that should not be shared. Help your child understand what types of information are unsafe to share online, such as their full name, address, phone number, school, or other images/ information that could help someone identify them. To help your child remember, post a “Do Not Share” list by the computer or on the device.
• Explain the limits to online relationships. Emphasize that it is okay to say “No” to requests for personal information, photos, money, and joining social media networks.
• Be smart about emails. Let your child know how dangerous it can be to open an email or attachment from someone they don’t know. Reinforce the importance of checking with you or another trusted adult if they get a message that they’re unsure about.
• Encourage your child not to delete messages. Tell them to save anything that they’re not sure about, doesn’t feel right, or seems hurtful. Set aside time to review the messages together.
• Explain cyberbullying, predatory behavior, and sexting. Although it may feel uncomfortable to talk about, your children can’t protect themselves from what they don’t know about. Rehearse “what to do if…” scenarios.

Photo by Julia M Cameron on Pexels.com

Provide resources and support.

Children also need to know how to identify when someone else is behaving inappropriately online and what to do about it.

• Use online tools. Websites such as InternetMatters.org or NetSmartz.org provide a wealth of resources for both parents and children. InternetMatters is a resource hub specifically designed for children with additional learning needs and their families. These sites offer tools help children learn about online dangers using role-playing, pictures, and other strategies. NetSmartz resources also include the SymbolStix safety pledge, a visual online safety contract designed with support from the National Autism Association.
• Encourage them to trust their gut. Teach your children to be skeptical and listen to their own instincts. Use role-play to practice recognizing and responding to several different scenarios your child may encounter online.
• Give them a lifeline. Make sure your children know that you and other trusted adults are available for them if they run across something online that makes them uncomfortable. Even if they’ve done something they shouldn’t have, it’s important for them to be able to reach out to adults they can rely on.
• Find safe online spaces. Seek out social networks and peer support that are focused on activities and interactions that match your child’s interests and developmental level.
• Be curious and ask questions. Find out what websites your child likes to visit. Have they ever seen something online that made them feel sad, scared, or confused? What would they do if they saw something online that made them uncomfortable?
• Connect with your child by learning how to use the technology and social media that s/he is using. Ask them to show you how it works and specifically how they use it.

Photo by Ketut Subiyanto on Pexels.com

Reach out to Easterseals’ Social Services team for more ideas about how to support your child’s social and emotional development. You can contact us at socialservices@eastersealsdfvr.org.

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.

Short Stories to Explain the Coronavirus to Children

By: Yvonne D. Anderson, LCSW, CADC, CODP II, Bilingual Licensed Clinical Social Worker

The current pandemic of the novel coronavirus (COVID-19) is a difficult time for everyone and leaves a lot of unanswered questions, especially for children. The following short stories are great resources to bring some clarity and comfort to young children while their normal routines are disrupted. The stories below vary in length and detail ranging from very short to slightly more detailed. I hope you find a story or two that will be helpful for your specific child’s needs!

Caroline Conquers her Corona Fears

By: Kellie Camelford, Krystal Vaughn, & Erin Dugan

This short story answers some of the many questions young children may be having about Covid-19 and why their normal routines are so different. A simple breakdown of social distancing and safety procedures are talked about to help young children understand why certain actions are in place. Overall the story is informative, positive, easy to read, and is a great resource to calm uncertainty and confusion for children. When printed out, the book doubles as a coloring book and includes a page for parent’s and children to write out a simple schedule.

Story Link: https://alliedhealth.lsuhsc.edu/clinics/docs/CarolineConquersherCoronoaFears31820.pdf

Coronavirus: A book for children

By: Elizabeth Jenner, Kate Wilson & Nia Roberts

What is the coronavirus, and why is everyone talking about it?

Engagingly illustrated by Axel Scheffler, this approachable and timely book helps answer these questions and many more, providing children aged 5-10 and their parents with clear and accessible explanations about COVID-19 and its effects – both from a health perspective and the impact it has on a family’s day-to-day life.

With input from expert consultant Professor Graham Medley of the London School of Hygiene & Tropical Medicine, as well as advice from teachers and child psychologists, this is a practical and informative resource to help explain the changes we are currently all experiencing.

Story Link: https://nosycrow.com/wp-content/uploads/2020/04/Coronavirus-A-Book-for-Children.pdf

Dave the Dog is Worried About Coronavirus

By: Nurse Dotty

A book for children about coronavirus that aims to give information without fear.

With everything that is going on at the moment; big changes to children’s routines and lots of stories on the news it can be a really scary time for children.

This book opens up the conversation about coronavirus and some of the things they might be hearing about it and provide truthful information in a reassuring and child friendly manner.

Story Link: https://nursedottybooks.files.wordpress.com/2020/03/dave-the-dog-coronavirus-1-1.pdf

Hello! My name is Corona Virus

By: Manuela Molina

Summary from the author: I have created this short book to support and reassure our children, under the age of 7, regarding COVID-19. This book is an invitation for families to discuss the full range of emotions arising from the current situation. It is important to point out that this resource does not seek to be a source of scientific information, but rather a tool based on fantasy. My recommendation is to print this material so children can draw on it. Remember that emotions are processed through repetitive play and stories read multiple times. Share COVIBOOK and help ease kiddo’s anxiety all over the world. 

Story Link: https://660919d3-b85b-43c3-a3ad-3de6a9d37099.filesusr.com/ugd/64c685_0a595408de2e4bfcbf1539dcf6ba4b89.pdf

I’d rather go out!

By: Deborah Woods

This short illustrated story highlights the use of imagination as a means of dealing with stressful times.

Story Link: https://www.magneticmoms.com/userfiles/481350/file/I%20would%20rather%20go%20out%20story%20(2).pdf

My Hero is You

This book was a project developed by the Inter-Agency Standing Committee Reference Group on Mental Health and Psychosocial Support in Emergency Settings (IASC MHPSS RG). The project was supported by global, regional and country based experts from Member Agencies of the IASC MHPSS RG, in addition to parents, caregivers, teach-ers and children in 104 countries. A global survey was distributed in Arabic, English, Italian, French and Spanish to assess children’s mental health and psychosocial needs during the COVID-19 outbreak. A framework of topics to be addressed through the story was developed using the survey results. The book was shared through storytelling to children in several countries affected by COVID-19. Feedback from children, parents and caregivers was then used to review and update the story.

Over 1,700 children, parents, caregivers and teachers from around the world took the time to share how they were coping with the COVID-19 pandemic. A big thank you to these children, their parents, caregivers and teachers for completing the surveys and influencing this story. This is a story developed for and by children around the world.

Story Link: https://interagencystandingcommittee.org/system/files/2020-04/My%20Hero%20is%20You%2C%20Storybook%20for%20Children%20on%20COVID-19.pdf

Also, please don’t hesitate to reach out to anyone in our Social Services department if you and/ or your family need support, resources, etc. We are happy to help. Our staff completes comprehensive assessments to pinpoint what a child and family need to be able to succeed. Working with the entire family, our staff can identify each child’s unique strengths and challenges and then tailor a treatment plan to meet those needs.

Our Social Work and Counseling services can help children and their families learn to grow together. Contact us at socialservices@eastersealsdfvr.org or 630.620.4433.

Understanding the Grieving Process for Parents of Special Needs Children

By: Sharon Pike & Cara Long, Parent Liaisons

It’s graduation season! We love seeing and hearing about the accomplishments of each graduate and their hard work! But for some parents, seeing their child’s peers reach graduation or other milestones, can trigger many emotions, especially if their child has a developmental delay or disability. For some children, these milestones will come much later or maybe not at all.  We hope to give you a greater understanding of the process families experience in coming to terms with a child with a developmental delay or disability. We speak from experience as we each have a beautiful young woman with a disability.

First, after the birth of a child with special needs, the diagnosis or incident that changes their child, parents will grieve the loss of the “perfect baby”, they’ve dreamed about. They grieve the dream, not the child.

Dr. Ken Moses is a psychologist who has devoted himself to helping people deal with crisis, trauma and loss. He describes it beautifully and accurately, “Parents generate core level dreams for their children even before the child is born.  Disability shatters those dreams. Grieving is the process where by parents separate from those shattered dreams and begin creating new dreams.”

He also says “few would argue that facing the devastating and continuing loss of having a child with a disability is among the most painful experiences that a person can confront. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.” You can read more in The Impact of Childhood Disability: The Parent’s Struggle.

Photo from Rich Howe

We recognize that for many parents this is their first experience with a disability and it unfortunately takes time to gain the insight needed. We want to help you work through the states of grief Dr. Moses mentions, so you aren’t stuck in a certain stage and can see the great potential in your child. This potential might be different than you imagined, but is still a wonderful journey.

We agree with Dr. Moses that the process takes time and honestly never really ends.  We learn to reshape our dreams with the help of the professionals we surround ourselves with. But grieving is the only way we can move on.  The parents who resist this process, become worse not better in response to the loss of the dream.

Below are Dr. Moses states of grief that you may be familiar with but need to recognize and move through them on this journey:

Denial/Shock

• This stage gives parents the chance to “feel it” and start to find support and ways to navigate this new world they’ve been dropped into.
• It buys time needed to blunt the initial impact, to discover inner strengths, find resources.

Anxiety

• With the loss of a dream, parents are forced to change
• Anxiety mobilizes the energy needed to make these changes

Fear

• This stage speak to itself! The questions come “Will he walk, Will she talk,” “Will he go to college or marry?”

Depression

• This stage is one that parents can feel repeatedly over the years and it’s depths can be simple sadness to deep, long lasting depression that needs medical intervention.

Pain/Guilt

• This stage also gives parents the chance to “feel it” to “question it” and ask themselves “What did I do to cause it?” “Why did my body fail?”

Anger

• This stage parent ask,”Why me, why not you?”
• A parent’s sense of justice is challenged
• Their anger is often directed at someone or something (child, medical professional, or spouse)

Acknowledgement and Hope

• Parents have come to grips with the fact, this is life and with modifications they can still live the dreams they had for their child and family.
• They learn that there is always Hope.

This journey is reflected in this poem from a parent of a child with autism.

What You Should Know About My Child
by Brian Rubin 

Remember that he is, first of all, my child.
Let me see him smiling in his sleep.
And let me think how handsome he is.
Help me not lose sight of my son
In the sight of his limitations.

I know that you care for my child,
And that you work hard with him.
I need your expertise to help him become All that he is capable of being.
You need my help in understanding who he really is.
And in the following through at home
With things that are important.

Remember though, that you send him home at night,
And have weekends off and paid vacations.
Let me have the luxury of having a vacation…
Sometimes physically, sometimes emotionally.
For  a day… a week… a month..
Without your judging me.
I will be there for him when you are long gone.

I love my child with an intensity that
You can only imagine.
If on a given day, I am tired or cross with him,
Listen to me.
Lighten my burden.
Do not judge me.

Celebrate with me.
Rejoice in who he is and who he will become.
But forgive me if, from time to time,
I shed a tear…
For who he might have been.

This journey is hard and can be isolating, especially for parents of babies with challenges.  But you are not alone. We are here to support families through this process. We can be your sounding board and help find whatever resources you need. To learn more about our family services, click here.

How to Talk With Your Child About Their Disability

By: Susan Diver, MSW, LSW

I have been working with families and children with disabilities for more years than I care to admit.  It is a great job that I love very much.  The best days are when you feel like you have made just the smallest difference in the life of a child, a sibling or a parent.  I talk to parents every day about a large variety of topics dealing with their children; potty training, behavior, siblings, school, anxiety, bullying, respite, the list goes on and on.  If I was to address every topic that caused a family to be stressed, this blog would turn into a very long research project.  For today, I am going to talk about a topic that parent of children with a disability often ask me, “how do I talk to my child about their disability?”

You know your child the best; you understand their many moods and your strong personality will get you through a difficult but necessary conversation.  So put on your gym shoes and jump right in and get started.

Here are a few suggestions to remember when you have that conversation with your child about their disability:

• Think about your child’s cognitive level, start there.
• Be comfortable in what you are saying, rehearse, practice, talk it thru several times before talking to your child.
• Be honest!  My Grandmother told me, if you always tell the truth, you’ll never have to remember the story you told and tell it again, stick with the truth, it’s safe, easy and there is nothing to remember. 
• Be Consistent…….once you have decided on what to say, how to say it, always use the same story, wordage to talk to your child.
• Be strong!  You cannot be sad, cry or talk about how bad you feel.  You are simply telling your child what is their disability.  The stronger you are, the stronger they are!  The more positive you are about who your child is, the more positive they will see themselves.
• Check your guilt at the door!  You cannot use this as a time to relieve your guilt about your child’s disability, this is a time that it’s not about you, it is about your child!
• Pick teachable moments; when your child brings up the topic, when a question is ask, when he’s in the back seat of the car, when something has happened at school or a party.  But make it when your child is calm, not upset or crying.  This is not a good time, when your child is upset, just like you; they won’t hear you or what you are saying.
• Follow your child’s lead-Long before they ask you about being different, they will know they are different!  Use questions to see what they know, what they have overheard, what they understand.
• Try to talk when your child is alone.  You will know their cognitive level, what they understand, how best to talk to them, a sibling or other family member may have a higher or lower level of understanding and they will ask too many questions that will interfere with your talk.
• Be ready…the time will come that your child will ask, “why am I different,”  “why can’t I run like Billy?”  It’s coming, so the sooner you are ready, the better prepared you will be!

Siblings will want to know too! Use the same skills we’ve just talked about, use the same “story” you have used with your child.

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