Being My Child’s Voice

Being My Child’s Voice

by | Jun 30, 2020 | Advocacy, Different Dream

Being My Child’s Voice

Being my child’s voice after he was born in 1982 was difficult. But it was nothing compared to Trish Schaeffer’s advocacy to get the wheelchair her son needs. Read on to discover what keeps her going.

Being my child’s voice when everyday problems arise as the parent of a boy with disabilities is a journey. I have so much chaos going on any given day and come out of it wiser and more tired. 

But does that stop me from being my child’s voice again and again? 

No. It will never stop me or you from giving children the best we can. I’m not alone in this and neither are you. The problem I loathe the most is trying to get my child the adaptive equipment he needs. In this day it’s a long waiting game matched with a battle of wits and a will to win. 

The battle is with the insurance companies and the medical equipment companies. I get that nothing happens over night or in a month. 

But why does it feel like a hostage negotiation and an uphill battle of over a year? Do they want to break me? Drive me insane? 

Being my child’s voice meant putting in a request and year and six months ago to get   him a wheelchair when he grew out of his old one. I am waiting as the company has not even submitted it to the insurance for pre authorization. Put on top of that I’ve made a phone call at least every week since, and have not even gotten a call back on the status of his order. 

Now he is too big for his old chair and cannot start school without the new one we should have had over a year ago. 

I have lost my mind and sleep over the whole ordeal and even hurt my back because of the fact that I now have to carry him at fifty pound because of not fitting in his old wheels. 

How much longer can this battle go on? It’s a test of wills at this point. First the battles for insurance to pay for it. Then the medical company has dropped the ball for a year. And today I found out I may have to battle the insurance company again because the old paperwork expired.

Despite it all I will continue to fight for my son’s new chair and endure back pain for him. He is worth it all. 

I hope that someday insurance and companies will change with the companies, and it becomes easier for kids to get medical equipment. Until then I will continue being my child’s voice and make do with odd adaptations for my son. 

  • Like pool noodles under his fitted sheet to keep him positioned at night. 
  • Or a shade cover from an old tricycle attached to his wheels for sunny days. 
  • Or old yoga mats or nap mats to change him on public bathroom floors when there’s nowhere else to go. 
  • The simple fact is that I get it, you get it, we all get it. We lose our minds and the will to fight, but we keep going because it’s for our children. When people say that a special needs parent has the patience of a saint, is very true. We wait…and wait…and wait…and wait….with patience, grace, a sanity check of two, and maybe an adult beverage. Then we wait some more. 

I may still be waiting for my son’s wheels when you read this. You may be waiting for something, too. If you feel you you cannot wait any longer, contact the Better Business Bureau. Contact a community outreach program like Easter Seals and see if you can borrow adaptive equipment. Check with your school or a veteran’s or children’s hospital and see if they have any leads for you. Contact your city, state, or national representatives and about new bills to make equipment more accessible. Talk to anyone who will listen and don’t feel afraid to share your story or opinion.

You have a voice and you are your child’s voice. I have a voice and am being my child’s voice. It’s up to us to be sure our children are heard. 

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Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Schaeffer.

Author Jolene Philo

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Navigating an IEP Meeting During the Coronavirus Shutdown

Navigating an IEP Meeting During the Coronavirus Shutdown

by | May 21, 2020 | Advocacy, Different Dream, School/Education

Navigating an IEP Meeting During the Coronavirus Shutdown

Navigating an IEP meeting during the coronavirus shutdown can be tricky, but it’s not impossible. Guest blogger Jessica Temple offers tips parents can use to be on top of their game and remain tearless now and after the shut down ends.

We recently had an emergency IEP meeting, the second one we’ve attended, for our 4-year-old son who has autism. My husband and I were woefully unprepared for the first meeting.  We didn’t know how to prepare, what our rights were, or how to work with the system.

This second meeting came almost 12 months afterwards. I have learned a lot during that year about what goes into IEPs, what to say, what not to say, what rights parents and our special needs children have, and how the meetings are run. I am here to share tips about navigating an IEP meeting during the coronavirus shutdown without shedding tears. The goal is always to get the appropriate IEP for your child. (Bonus tip: Never say best or most, just appropriate.) 

Tip #1: Find Advocates

Find someone who has a great deal of knowledge, and ask, ask, ask! This can be as informal as a friend who has gone through many IEP meetings, contacting the Parent Training and Information Center through your state, or hiring a formal IEP or disability rights advocate. I used the free services through my state. They were kind enough to offer me 3 people to talk to. These individuals provided documents about our rights, important buzzwords, as well as IEP document phrasing and what to say if the team denied an accommodation we deemed necessary. They helped me to create and word several goals and services that would be the most useful to my son at his present age and stage. They also provided snippets of case law should our rights be violated. 

Tip #2: Attend Workshops

Many states have free workshops through their school systems. Different special needs societies also have free workshops dedicated to children’s education, special needs, and IEPs. We attended a workshop a before our IEP meeting. They went through every page of a blank IEP and discussed what services are appropriate when, how to ask for what’s needed, how to have it phrased in the actual document, and what to do if the IEP team pushes back. On top of that, they said our local school system has a free,special needs lending library. They also brought a large selection of books specific to IEPs. 

Tip #3: Read Books about IEPs

I flipped through many of the books at the workshop, and selected the four that I found most useful and relevant. They discussed each component of the IEP, the case law related to the IEP, and step-by-step ways to solve problems. The books had templates for letters to write to the IEP team, examples of questions to ask, instructions for writing effective goals, and strategies to resolve disputes. The four books I recommend are:

The Art of Advocacy by Charmaine Thaner, M.A.
Negotiating the Special Education Maze by Winifred Anderson, Stephen Chitwood, Deirdre Hayden, and Cherie Takemoto
The Complete IEP Guide by Lawrence M. Siegel
From Emotions to Advocacy by Pam and Pete Wright

Tip #4 Attend a Local Support Group

We attended several local autism support group meetings. The individuals who attend these meetings have often been in the special needs world for a long time and have experience with IEPs. They provided tons of handouts, resources, and had another lending library! They were supportive, understanding, and tried to answer my questions. 

Tip #5: Access Online Resources

I have used the internet to find local support groups and Facebook groups. I found local Facebook groups to most beneficial as other ones were either too general or didn’t provide helpful enough information. Websites specific to a specific disability explained what should or could be included in the IEP for that disability.

These websites have copious information related to laws and IEPs: 

Wrights Law 
A Day in Our Shoes
The Wrightslaw Way
National Disability Rights Network
Education Law Center

Tip #6: Listen to Podcasts

I love podcasts that provide useful help with IEPs, important perspectives, and information on disability rights. Here are my favorites:

Don’t IEP Alone by Lisa Lightner
LOMAH Special Needs Podcast
Thriving in The Midst of Chaos with Jessica and Lewis Temple 

Tip #7: Coronavirus and IEPs

Coronavirus has thrown a monkey wrench into IEPs. These resources may be very helpful  for you to learn more about how this may affect your child, what to do in this unprecedented time, and what your rights are:

United States Department of Education California Department of Education American Bar Association 
National Center for Special Education in Charter Schools 
Parent’s Place of Maryland

Tip #8: Coronavirus and Homeschooling

The following resources may be very helpful to keep your child’s IEP and services on track until schools are in session again and help you with homeschooling:

A Day In Our Shoes Homeschooling
Resources School Closure Toolkit
Easter Seal

IEP  meetings are stressful. They are a lot of work, and there is a lot to know. However, if you utilize these resources and arm yourself with knowledge, you will be tearless, successful navigating an IEP meeting during the coronavirus shutdown, and satisfied with the IEP you and your child’s team put together. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jessica Temple, PsyD, ABPP-CN, is a board-certified adult clinical neuropsychologist. She has two children who have special needs. She and her husband, Lewis, host a podcast called Thriving in The Midst of Chaos, where they talk about all aspects of special needs including getting a diagnosis and treatment, self-care, relationships, transitioning to adulthood, school, and finances. They created Thriving in The Midst of Chaos to offer support to others in the special needs world as well as to provide an easy way to find the most useful resources. They aim to share helpful resources with others, advocate for improvement, change in the special needs world, and offer a different perspective on parenting.    To find out more about how Jessica’s work can help you, contact her at fubarpod@gmail.com or @midstofchaospod on all social media platforms.  

Author Jolene Philo

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Changing Attitudes about Disability: A Road Map

Changing Attitudes about Disability: A Road Map

by | May 5, 2020 | Advocacy, Different Dream

Changing Attitudes about Disability: A Road Map

Changing Attitudes about Disability is a new book by today’s guest blogger Dan Vander Plaats. Read on to discover how a short conversation with a waitress motivated Dan to write the book and changed his own attitudes, too.

She didn’t mean to do it. In fact, she hadn’t done anything a million other people hadn’t already done. I had seen it happen so many times that I don’t know why his time it made any difference.

But it did.

She treated me like I was disabled.

Which I was. I was born with damage to a nerve cluster at the base of my brain, causing some slight under-development physically, but more significantly affecting my speech. It’s a pretty obvious speech disability.

I was visiting a restaurant in a midwest city with a few co-workers and two adults who participated in the day program at Elim, where I have worked for 23 years as a fundraiser. The server had done everything right. She came up, introduced herself, and then asked us all our names.

When she heard our program participants speak, with slight slurs and some speech impediments of their own, her head cocked to the side and her voice went up a little in register. It must have seemed to her like this would be the nice way to treat people with disabilities. It even seemed nice to me. Then she turned to me, and I said my name, and she treated me the same way. What had seemed nice now seemed simply condescending. I blushed and tried to laugh it off, but I was angry.

I stewed on it for a couple hours before realizing that the problem wasn’t just that she was condescending, no. There was a bigger problem. The problem was that I hadn’t taken issue with her attitude until it was directed at me. Simply put, I thought I was worthy of different treatment from my friends from Elim.

The problem was my attitude. I thought that people with disabilities should be treated the way they are – that it was simply normal and okay. I also thought that I didn’t fit with that group, because I saw myself as “normal.” 

This, brothers and sisters, is the problem. When God formed us, He did not do it differently when it came to people with disabilities. We are all made in His image, fearfully and wonderfully made (Psalm 139). I Corinthians 12:22 says we that those parts of the body that seem weaker are in fact indispensable. Ephesians 2:10 says we are all masterpieces with work to do. The problem is that we don’t listen to this; we too often deceive ourselves into believing that there is an us and a them, and “them” have disabilities.

That night, after leaving the restaurant, I wrote the first draft of The 5 Stages, a tool that has been translated many times and is helping churches and Christians around the world assess their attitudes about people with disabilities.

Recently, Dordt Press released a booklet called Changing Attitudes About Disabilities where you can learn more about these attitudes.

If you happen to visit a steakhouse in Sioux Falls, South Dakota, maybe you could hand a copy to the server who inspired the book, and this blog post.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Dan Vander Plaats is the Director of Advancement at Elim, a global, Christian disability ministry based in Crestwood, Illinois. Dan serves on the advisory committee for a bi-denominational Disability Concerns. In 2009, he developed The 5 Stages: Changing Attitudes to help churches and individuals assess and change their attitudes toward people with disabilities, and he’s the author of Changing Attitudes about Disability. He is married to Denise (Hiemstra), and is father to Ben and Emma.

Author Jolene Philo

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My Child Is Different, but We Have More in Common Than You Think

My Child Is Different, but We Have More in Common Than You Think

by | Mar 12, 2020 | Advocacy, Different Dream, Special Needs Parenting

My Child Is Different, but We Have More in Common Than You Think

My child is different, says guest blogger Amy Felix, and yet. And yet, Amy knows that parents of typical kids and parents of kids with special needs have much in common. That commonality, she also believes, is what will help us raise a new generation of compassionate and kind adults.

When she was younger, you thought it was cute. The way she jumped up and down excitedly and repeated everything I said. Her big, green eyes and sweet, round angel face were the first things you’d notice when she entered the room. Her meltdowns were, in your mind, toddler tantrums and you gave me that “I’ve been there, too” smile to relieve the tension you could tell I was feeling. We were the same back then. You and I were just parents, and we understood each other without having to say a word.

Then she got older.

My little girl isn’t so little anymore and, suddenly, there’s a great divide. Now my child is different. You still give me that polite parent-to-parent smile when we enter the room, but when she gets excited or upset–we’re no longer the same, you and me.

Now you’re staring.

As she flaps her hands and talks loudly when she’s feeling joy, or paces back and forth with her hands over her ears when she’s upset. Her differences are becoming more and more obvious to you. You look from her to me, sizing me up. When you realize I’ve noticed it, you look away and avoid me. We no longer have an understanding, and it hurts.

We are strangers to one another.

I know that you have no way of knowing that my child has autism. Not all disabilities are visible. Just as I have no way of knowing anything about your child or your life. So, let’s take a step back for a moment, beyond just us. Beyond this situation we’re finding ourselves in.

Our children are here, at this birthday party or that playground, together.

They are taking it all in and, despite what so many articles may say, bullying is not just something that naturally develops as a part of childhood. Bullying starts with us. You and me. Moms and dads. Staring at one another in the presence of our children who, though they are busy eating cake or playing catch, are also busy watching. Those little sponges are absorbing every moment of uncomfortable silence between us. They haven’t treated each other differently yet. Our children haven’t begun to place each other on a scale of differing values.

But they will because my child is different.

Unless we change this judgmental way of interacting. Unless you look at my situation, unless I look at yours, and try to see the positive; try to embrace the differences as special and not strange. Unless we can be more like our children, our children will all-too-soon be more like us–the us that stands divided. The us that doesn’t take the time to try and understand. The us that we’d rather not acknowledge. The window of time is closing in which we still stand a chance to raise a generation of compassionate, open-minded people. So, from one parent to another, this is my plea.

My child is different. So is yours.

They all are, and that’s what makes them breathtakingly beautiful. Please, let’s not take that truth from them and twist it into the lie that they all need to fit into the same mold. If you see my child doing something that you don’t understand, ask me about it! I’d love to explain what makes her unique and I’d love to hear about what makes your child special, too.

As a parent, I’m different.

I have to be, because my children are not your children. Each of these little people have different personalities and need different things from us as moms and dads. Can we please leave the judgmental stares and awkward silence at the door and just support each other? We may be on very different parenting journeys, but we have one thing in common.

We love our children.

There’s nothing we wouldn’t do for them. When we’re faced with differences that feel too great and we don’t know how to relate to one another, let’s just start there. Chances are, we have more in common than you think.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for both at the bottom of this page.

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My name is Amy Felix. I’ve been married for 10 years to a guy who’s totally out of my league. I’m a homeschooling mom to 4 kids, ranging in age from 9 to 2 years. That’s really enough work on it’s own but, because I love it, I’m a photographer as well. And, in my spare time, I write. My faith is the driving force behind my special needs blog: Appointed To Hope. I’m a firm believer in being real, transparent, and using the gifts of this journey as a way to relate to others in their joy as well as their sorrow. To read more about my adventures in special needs parenting, visit my website at www.appointedtohope.com.

Author Jolene Philo

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Heartfelt Gratitude for Special Needs Blessings

Heartfelt Gratitude for Special Needs Blessings

by | Feb 6, 2020 | Advocacy, Books and Resources, Different Dream

Heartfelt Gratitude for Special Needs Blessings

Heartfelt gratitude for special needs blessings may seem like a contradiction of terms for parents grappling with a new diagnosis or the loss of a child. Guest blogger Paul Gallagher describes how he and his wife Valerie cultivated gratitude through the life of their first child, Joshua, and how they use that gratitude to bless others. My wife Valerie and I were expecting our first child in England, her native country, where I was serving in the United States Air Force (USAF). The nursery was ready, the due date was approaching. We were so excited! Two weeks before that date, our USAF doctor noticed something that resulted in us being referred to Guys Hospital in London. After a sonogram, the doctor told us our son had a hypoplastic left heart and would not live more than a few hours after birth. We were devastated. Fortunately, the air force quickly whisked us to the United States where doctors were willing to intervene. We arrived after an 11 hour flight in a military cargo aircraft with Valerie on a stretcher. Josh was born at an army hospital and later transferred to Texas Children’s Hospital to await a heart transplant. At 3 months of age, Josh had the transplant.

Heartfelt gratitude for special needs blessings can take a long time to cultivate. Paul Gallagher describes how he and his wife learned about gratitude and how they want to bless others.

Organ transplantation isn’t a cure. It is trading an unmanageable problem for a manageable one. As a young couple we learned complex immunosuppressive medicine regimes, placed nasal-gastric feeding tubes, and experienced the worries of having a child with a compromised immune system. Later we learned that Joshua was also autistic. We’ve spent countless days living in ICUs and hospital rooms. On numerous occasions we’ve been pulled into a room and told Josh was not going to make it. We watched him endure procedures, ouchies, yucky meds, and pain. We cared for him in our home until he was almost 18. He passed away in January of 2011.

Heartfelt gratitude for special needs blessings can take a long time to cultivate. Paul Gallagher describes how he and his wife learned about gratitude and how they want to bless others. Josh has a younger brother and sister who also walked this path with us. To be sure, Josh’s good days far outnumbered the bad, but life could be unpredictable and very hard. What did we learn through these experiences?
  1. A different understanding of blessings. Blessings are often brought to us through the hardest circumstances. In the hardest times, there is something to be thankful for–if we look for it. We can only experience the blessing of God’s comfort when we are broken-hearted.
  2. We can avoid victimhood and self-pity focusing on what we can do. The quickest way to loose hope is focusing on circumstances we can’t change. But whatever our circumstances, there is always some way to be a blessing to others–if we look for it. Even in impossible situations, we can do something.
  3. We must accept life on its terms and trust the Lord. If we compare, we step away from blessings because comparing my circumstances with others or with the way I think they should be will make it difficult to be thankful. We can’t bless bless others when we aren’t thankful.
We are thankful because we know God loves Josh even more than we do. We are thankful that when Josh entered God’s presence, all the pain he ever felt was not even a memory.  Between now and our joyful reunion, we try to bless others through Josh Tree, a non-profit we recently started. Josh Tree allows us to share our heartfelt gratitude for special needs blessings and keep Josh’s memory alive by helping families with children who have life-changing illness. The long term vision of the organization is to provide those families with resources to stay resilient in the face of incredible challenge as well as helping with their more immediate needs. We invite you to visit the website to learn more about how Joshua taught us to cultivate gratitude for special needs blessings in his life and ours. Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS fee
Heartfelt gratitude for special needs blessings can take a long time to cultivate. Paul Gallagher describes how he and his wife learned about gratitude and how they want to bless others.

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Paul Gallagher is a retired United States Air Force (USAF) Chief Master Sergeant with 29 years of service. He and his lovely wife Valerie are now empty nesters and living in New Braunfels, Texas where he works as a business consultant. They enjoy friends and family, along with hiking and camping.

Author Jolene Philo

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A Normal Life with EA

A Normal Life with EA

by | Jan 9, 2020 | Advocacy, Different Dream

A Normal Life with EA

A normal life with EA is possible according to Logan Ebert’s firsthand account of how his long gap, pure esophageal atresia (EA) was repaired. I’m delighted to welcome Logan as today’s guest blogger, EA/TEF survivor, and thriving 23-year-old young man.

The first two years of my life were anything but normal. The traditional struggles and charms of early parenthood were overshadowed by complex medical procedures, life-altering decisions, and countless nights sleeping in hotels, the intensive care unit, and anywhere but home. After a long series of surgeries and the unknown, I would eventually live with what was thought to be the impossible: a normal life with EA.

A couple of months before I was born, my parents were told I most likely had EA and possibly VACTREL.  I was born with long gap, pure EA and heart defects. The options for long gap EA were to use the colon as an esophagus, a spiral myotomy, or pull the stomach up into the chest (gastric pull-up). These were the popular fixes at the time, and could be performed by a handful of surgeons. This is still the case almost 25 years later, even though these remedies come with numerous complications and cause future problems that prevent the patient from living a normal life.

My parents, desperate and two years before Google was invented, found a snippet in a medical journal at the University of Denver medical library that had just been written by Dr. John Foker. He was a surgeon at the University of Minnesota who had just developed an innovative and experimental approach to treating my birth defect through tension-forced growth, essentially growing my esophagus out of the tissue that was already there. Miraculously, Dr. Foker had only begun to use this method on patients with longer gaps just weeks before I was born, making me Dr. Foker’s second patient at only 2 months of age. I was a true guinea pig when it comes to treating EA in this way.

The drama of my early childhood is something I’ve only ever experienced through stories. Despite routine checkups and a few cool scars, very little has physically separated me from my peers–apart from being extremely handsome, and humble. As I finish up my dinner of two freshly grilled brats, a side of orzo, and a salad, I can reflect on my ability to explore and enjoy the expanse of the culinary world. I eat anything from red meats to popcorn, to spicy curry and pad thai. I haven’t missed out in the slightest. In the summer, I routinely go on high-alpine hikes, and in the winter I’m on the ski slopes almost every weekend. I scuba dive, have finished a triathlon, and para-sailed–all with what were once considered compromised lungs. 

Dr. Foker has since retired, but not before establishing a world-class EA/TEF program at Boston Children’s Hospital. Unfortunately, there are children every day who are born with EA, and parents that are presented with the options that were available at the time of my birth. I am eternally blessed that my family sought out Dr. Foker, took a bold chance on an experimental procedure, and helped me live a normal life with EA, the life I want.

My hope is that my story will give parents and children of the EA community a reason to believe in the miraculous, that there is a promise of living a normal life with EA. Further, I hope to advocate for the tremendous work that has been done by the team at Boston Children’s to carry on Dr. Foker’s legacy. 

My parents, Fred and Mara Lee Ebert, would be happy to answer any questions you may have. They can be reached at MaraLeeSonoma@icloud.com.

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Logan Ebert is 23 and lives in Denver, Colorado. A recent graduate of the University of Denver, Logan enjoys snowboarding, hiking, camping, biking, and any outdoor sport. Born with long-gap esophageal atresia, Logan was the second recipient of what is now known as the Foker Method, which he attributes largely to his ability to live a normal and active life.

Author Jolene Philo

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