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.

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

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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.

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.

How to Plan a Sensory Friendly and Accessible Vacation

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

Summer vacation is in full swing, along with all the stress and planning that parents feel as they try to make a great relaxing vacation for their whole family. For parents of children with disabilities, these feelings can be very overwhelming as they have to take into account how to travel efficiently and safely while accommodating their child’s needs.

To make your trips a little easier, I’ve compiled a list of resources about air travel, cruises, and US-based destinations that are perfect for a family with a child with disabilities.

Air Travel

TSA Cares is a national program through the Department of Homeland Security that offers one-on-one assistance navigating the airport and security for people with disabilities. Services include escort by a Passenger Support Specialist who can meet you at a specific point in a chosen airport, help with baggage through security, assist in security checks, and just be another support system navigating a chaotic environment such as an airport.

Click here to learn more about TSA Cares. You can also contact them with further questions at (855) 787-2227 or TSA-ContactCenter@tsa.dhs.gov

Open Taxis is a new wheelchair accessible taxi service in Chicago. It is open 24/7, so it is perfect for quick taxi rides to the airport without parking your own accessible vehicle at the airport for the entirety of your trip. You can call to prearrange a trip or call the day of the trip. You can schedule a ride by calling 855-928-1010.

Travelers Aid Chicago is a service in Chicago O’Hare that provides support and protection for “vulnerable at-risk travelers who need guidance, support, or advocacy” as well as crisis intervention for passengers with cognitive or developmental disabilities. Information desks are located in terminals throughout O’Hare.

Travelers Aid Chicago provides the option to schedule an Airport Practice Experience. You can take a “practice run” through O’Hare airport including going through security and the terminals to help children know what to expect on the actual travel day. They even have visuals to provide to families so that the child can have their own visual schedule of their trip to O’Hare.

I would especially recommend this for a child who may have Autism and/or an Anxiety disorder and has not experienced anything like flying before.

To inquire about Travelers Aid Chicago’s services or to set-up a practice day, contact them at (773) 894-2427 or travelersaid@heartlandalliance.org

Cruises

Autism on the Sea is an international organization that creates cruise experiences for children and adults with Autism, Down Syndrome, Tourrette Syndrome, Cerebral Palsy and more. These experiences are currently available on well-known cruise lines such as Royal Caribbean, Norwegian Cruises, Carnival Cruises, and Disney Cruises.

With this service, cruise members who are experienced and background checked can accompany you on the cruise and adapt activities in order to fit the special needs of your family. This organization will also collaborate with you in order to contact cruise lines to adapt your vacation to fit the dietary, physical, mental, and emotional needs of your child.

They even provide images of common used “cruise ship words” to be used as part of a child’s Picture Exchange Communication System (PECS) so that you can create a social story to prep your child for their trip.

Click here for additional information on Autism on the Sea and their services.

Disney Cruises offers many special services for passengers with special needs, such as accessible suites, access to medical equipment, sharps containers, and a variety of other accommodations. Disney Cruises also offer American Sign Language (ASL) interpreters for on-board entertainment and shows. Please contact Disney Cruises 60 days before your cruise to arrange accommodations.

For more information or to request accommodations call (407) 566-3602 or email SpecialServices@disneycruise.com

“Stay-cations” in Chicago

As Easterseals DuPage & Fox Valley is based in the western suburbs of Chicago, here are some tips for exploring the Windy City!

The Chicago Children’s Museum Play for All program offers free admission for the first 250 visitors with disabilities the second Saturday every month from 9 a.m. to 10 a.m. to experience exhibits via a private tour. You must pre-register in order to get this special offer. The museum also has sound reducing headphones, pictures for a visual schedule, and lap trays for wheelchairs so that children with disabilities can experience the museum.

For more information on the Play for All program, call (312) 464-8249 or email partnerships@chicagochildrensmuseum.org.

Calm Waters at the Shedd Aquarium offers extended hours on selected days especially for children with disabilities. They have specially designed shows with novel sensory experiences, a “quiet room” for sensory breaks, and an app in which there is information about noise levels in different parts of the Aquarium to help you plan your trip.

Click here or call 312-939-2438 for additional information on Calm Waters at the Shedd Aquarium!

Sensory Saturday at the Field Museum: The Field Museum opens early on select Saturdays in which children with disabilities or sensory processing issues can enjoy the field museum without loud crowds as well as access to hands on experiences to learn through tactile play and exploration.

Click here or email to learn more about Sensory Saturdays at the Field Museum!

Want more inclusive event ideas for children with disabilities in the Chicagoland area? Click here!

Walt Disney World

It really is the happiest place on earth. Disney World offers numerous services and accommodations for children with special needs at each of Disney’s parks.

Services include:

• Access to Break Areas for children who need a break from the sensory overload of Disney. You can ask any cast member to help you locate a break area.
• Sensory Guides for each park’s rides and shows that have strobe lights, scents pumped in, loud noises, have a lot of unpredictability, bumps, go fast, etc. It even lists what type of restraint is used in each ride for safety as well as how long each ride is.
  This guide can help families of children with special needs decide which attractions would be most enjoyable for their child. If you are planning to go to Disney, it may be helpful to show this list to your Occupational Therapist, as they can help you figure out which rides will best suit your child’s unique sensory system.
• Resources for Children with Autism Spectrum disorders in booklet form. This booklet lists FAQ’s about Disney for children with Autism, what Disney recommends bringing to the parks (ID bracelet, a sensory toy, earplugs/headphones, etc.)
• Rental wheelchairs
• Empathetic, warm staff : Many blog posts from parents of children with disabilities rave about how warm and engaging Disney staff and characters are with their children with special needs- meeting them where they are and not overwhelming them. Click here to read our past blog, The Magic of Disney and Your Special Needs Child
• Sign Language interpreters
• Handheld captioning/video captioning
• Braille guidebook

Morgan’s Wonderland

Morgan’s Wonderland in San Antonio, Texas is an amusement and waterpark that has 25 “ultra-accessible” attractions. Opened in 2010 by parents of a daughter with physical and cognitive disabilities, Morgan’s Wonderland is the world’s first theme park designed specifically for children with special needs. This unique theme park has a variety of amazing attractions such as the Sensory Village (which is a replica small town for children to engage in imaginative play), wheelchair swings, a large sand box, a musical playground, and more!

Morgan’s Inspiration Island is a waterpark addition to Morgan’s wonderland that provides an opportunity for guests with limited mobility to experience the fun of a waterpark. They have access to waterproof chairs and compressed air operated power wheelchairs so that all children can play in the water without having to worry about ruin their personal power wheelchairs.

There are also hotels that are partnered with the amusement and water park that offer discounts and accommodations to make the entirety of your trip accessible. Morgan’s Inspiration Island was listed as one of TIME Magazines 2018 “World’s Greatest Places.” Best of all? Admission for guests with disabilities is free.

National Parks

The National Park Service has a list of the most wheelchair accessible hiking trails so that guests with limited mobility don’t have to miss out on the beauty of our national parks. There are wheelchair accessible hiking paths at the Grand Canyon, Sequoia, and Zion National Parks.

Whether you decide to go on a cruise, roadtrip, or fly somewhere this summer, bring up your vacation plans with your child’s therapists for further accessibility tips and sensory strategies that can make your trip more enjoyable for everyone involved. Happy travels!

For more information about Easterseals DuPage & Fox Valley and our services, visit: https://www.easterseals.com/dfv/our-programs/

6 Strategies to Prepare for Your Child’s IEP Team Meeting

By: Kimberly Lechner, Ph.D.

About the Author: Kimberly Lechner is a School Psychologist, Licensed Clinical Professional Counselor, and former special education administrator. She currently runs a private practice in Wheaton called Kids First Collaborative where she provides psychoeducational evaluations, clinical counseling, and special education advocacy. Her daughter receives services at Easterseals. 

It’s May, and IEP season is in full swing! As parents, we work so hard to support our children’s development, and we are so deeply invested in our children’s success at home and at school. We are thoughtful about how we collaborate with members of our kids’ school teams. We support our children’s teachers, and we hope that they recognize and value our voices as parents. Still, when it comes to the IEP process, we sometimes feel like outsiders among a team of educators who are making important decisions for our child.

As a school psychologist and former special education administrator, I’ve facilitated countless IEP meetings. However, as a parent of a child who receives special services, I am amazed by how overwhelming the IEP process can feel. As you prepare for your child’s upcoming IEP meeting, consider the following strategies to support effective and meaningful collaboration with your school team.

6 Strategies to Prepare for Your Child’s IEP Team Meeting

• Proactive communication matters

Schedule a conference call with your child’s teacher or case manager to touch on any anticipated concerns in advance.

• Request that teachers consult with outside providers in advance

This can include private tutors, therapists, physicians, or other individuals who may have valuable input. Be sure that release of information documents are signed for all parties. If necessary, ask private team members to provide a written statement regarding their impressions of your child and their recommendations for the team.

• Review your child’s current IEP

Pay close attention to the following areas:

1. accommodations and modifications
2. special education and related services
3. goals

Is your child’s IEP currently meeting his or her needs? Has your child made expected progress toward goals? Are there areas of functioning that are not meaningfully addressed in the IEP?

• Request a draft of the proposed new IEP goals.

School districts often prepare draft goals in advance, and parents should have an opportunity to consider draft goals prior to the IEP meeting. Note that determinations around eligibility, services, and placement are ONLY made in the context of the IEP team meeting and are not determined or drafted in advance.

Review your child’s draft goals in advance. Are the goals appropriately ambitious for your child? Do you understand how your child’s progress toward goals will be measured throughout the school year? Consider sharing any questions or concerns regarding draft goals in advance with your child’s team.

• Request copies of any evaluations of your child conducted by school team members.

You may also request any local data that will be used to support decision making (i.e. progress monitoring data and results of any district wide assessments).

• Write your own parent input statement.

Every IEP document includes a space for “parent educational concerns.” IEP facilitators ask parents to articulate their concerns at each IEP meeting. However, parents often respond with something general such as, “We want our child to be successful in school.” Although this simple statement is important, it might not fully express your goals for your child nor might it clearly articulate your concerns. Your perspectives are better understood when you have an opportunity to thoughtfully consider your family’s concerns and provide input in written form.

My husband and I recently attended our daughter’s reevaluation and annual review meeting, and I’m still processing all that transpired. I’ve yet to make it through an IEP meeting without a tear or two (or even an ugly cry), but I’m so very thankful to share that my tears have primarily come from a place of gratitude.

I see each IEP meeting as an opportunity to celebrate the progress my daughter has made and to reflect on the wonderful therapists and teachers who have helped our daughter grow and thrive. Our Easterseals therapists have played an incredible role in our journey, and so have the amazing teachers, therapists, and administrators from our school district. When I reflect on our recent IEP meeting, what resonates most is the love and support we felt from each and every member of our daughter’s team. I am also struck by the significant commitment of time, energy, and resources that went into preparing for this meeting. I can honestly say that our family experienced what TRUE collaboration looks like, both before and during this IEP meeting, and I am so very grateful for the professionals who made that possible.

As an advocate, I have the privilege of walking alongside families who are seeking that same level of collaboration, commitment, and support from their school teams. I typically find that both educators and families are interested in developing genuinely collaborative relationships. Nevertheless, disagreements do occur, and teams sometimes need to thoughtfully examine their assumptions and reengage in a truly child-centered problem-solving process.  I believe firmly in the power of parent engagement, and I know that children do best when families play a central role in their education.

Our 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

General Tips for Selecting Developmental Toys for Children

By: Laura Van Zandt, MS, OTR/L and Sarah Peabody, Physical Therapist

It’s the most wonderful time of the year! Time to decorate your home with seasonal decorations, listen to cheerful holiday music, start baking lots of yummy goodies, spend time with friends and family, and shop for the perfect holiday gifts. This time of year can bring merriment and stress! Especially when considering gift ideas for children.

If you are buying a toy for a child, it’s important to select something that is based on his/her individual need. Every child is unique. Purchasing a toy for a child with special needs involves taking into consideration the child’s unique developmental profile.

Children who lack fine motor skills often have trouble doing things with their hands, like holding a crayon, so they might enjoy toys with large knobs or big levers that will enable them to grasp them more easily. Children with social learning difficulties or sensory processing difficulties might prefer toys that offer movement or heavy work.

Children with physical disabilities might enjoy toys that have buttons and don’t require a lot of fine motor manipulation. They might also enjoy more arts and crafts that allow them to just move their arms without having to worry about holding onto something.

Choosing a toy that is age-appropriate, promotes healthy development, and encourages positive behavior works best. Use these tips below to help guide you for buying gifts for your child, a niece or nephew or other child:

General Tips for Selecting Developmental Toys for Children:

1. Spanning multiple age ranges

Finding a multipurpose toy that spans multiple age ranges is a great investment. Toys that are meant for several ages and stages of childhood will be kept around and cherished for a long time.  For example, this Shape Sorter, can be used in late infancy as you place the shapes in and out of the box with the lid open. As your child grows into the toddler stage and enhances their fine motor skills, he or she will learn how to manipulate the shapes and place them in the appropriate spot. You can then incorporate colors, shapes, etc. all into one piece as they advance even more. Another example is magnetic letters. A child can use these at a young age to learn letters and sounds and as they grow into elementary years use them together to make words.

2. Be cautious of age recommendations

Many toys have a suggested age range based on the safety and developmental appropriateness for a child. These recommendations are based on the developmental abilities of an average child and may serve as a starting point for you when selecting a toy for your child. A toy should be challenging, but not frustrating. Likewise, if a toy is too simplistic and beyond your child’s abilities, he or she will quickly lose interest. Children learn and grow at various paces, and what might be an appropriate toy for one two-year-old child may not be for the next.

3. Promoting Exploration and Imagination

Research has found that toys that do “too much” don’t encourage children to use their imaginations. Stuffed animals that talk and sing only prompt the child to press a specific button which takes charge of the play scheme. Instead, look for a toy like blocks. Blocks can be stacked up to build a tower, knocked down by a dragon, lined up to make a city, the list goes on and on. The more your child has to problem solve and use his or her imagination, the more your child will learn through play.

4. Think, Move, and Interact

This generation loves to be entertained with screens. Instead of getting that Ipad or other video console, look for toys that provide opportunities for cooperative play that encourage the development of social skills and positive behaviors like taking turns. Board games are a great example!

5. Sensory Considerations

Toys that are tactile or visual can often help improve how a child processes the information. Music, varying textures, flashing lights, and colors can all improve the sensory appeal to your child. It is important to know the needs of your child because what is appealing for one child may be overstimulating for the next.

6. Promoting Inclusion

Toys that promote groupwork and peer interaction with other children are great to promote social skills and improve self-esteem and overall quality of life.

7. Think outside the box.

Toys don’t always have to be used in the conventional manner. For example, that food puzzle might be a little hard for your child to sit still and focus to complete, however, maybe your child would be motivated to find the pieces hidden in a tactile bin or exploring the house on a gross motor adventure to find the food. For children with physical disabilities, many battery operated toys can be adapted for switches. Check out this blog for directions and this link for purchasing battery interrupters.

If you child is younger, can you use that ring stacker to look through the circles together at each other. Or maybe the rings fit on different body parts. If your child is older, think about using the toys within movement activities.

8. Will the child make memories with it?

Giving experiences is becoming a new, more popular trend (for multiple reasons!). Taking time to explore local attractions can create long lasting memories and even new post-holiday traditions. Most businesses and even public libraries offer gift certificates to local attractions. This is a great way to really personalize a gift for your child.

9. Fun!

Last but not least, make sure the toys are engaging and fun. Do not force a toy upon a child. If they appear not interested in a certain toy, leave it for a few days and re-introduce it at another time. Keeping the toys fun will ultimately make the learning fun for your child.

Visit this blog next week, for more of our specific toy recommendations! You can also search our previous blogs for each year’s toy recommendations like here and here. Happy Holidays! For more information on Easterseals DuPage & Fox Valley visit eastersealsdfvr.org.

 

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.