Accepting Help and Letting Go: The Dilemma of a Special Needs Parent

Accepting Help and Letting Go: The Dilemma of a Special Needs Parent

by | Jul 6, 2017 | Advocacy, Different Dream, Self-Care and Stress, Special Needs Parenting

Accepting Help and Letting Go: The Dilemma of a Special Needs Parent

Accepting help and letting go are hard pills for parents of kids with special needs to swallow. As her daughter nears her 20th birthday, guest blogger Karen Jackson reflects upon what she’s learned about accepting help and letting go. Her struggle is a universal one, so expect to see yourself in what Karen has to say.

Accepting Help and Letting Go

Accepting Help

Accepting help. It has never been my strong suit. I am pretty sure that I know the best way to care for my daughter and what works well for her. Yet, it is not only a blessing to have caregiving help for Samantha. It is also good for her to have others in her life to push her towards independence and provide new ideas and experiences.

Parents of children with special needs are fiercely strong advocates, used to doing whatever it takes for kids. We are often hyper-vigilant, and we function on less sleep that most. We balance family, work, therapy, numerous medical appointments, and medications. We have been doing this for years and years and years!

So when someone offers to help in any form–whether it be a short respite, or long term in home care–we are simultaneously ecstatic and cautious. How could anyone know our children or care for them like we do? How do we step away to get a short break or more permanent support?

Six years ago, we received notification that we would soon be getting waiver services from the state. I stood in the shower, contemplating what it would mean to our family to have consistent help in our home. I cried, relieved that after 13 years of caring for a child with severe disability, the state finally recognized we needed help.

Waiver services changed my life. But along with that help, so needed and much appreciated, came the realization that I would need to give up some control, let go of constant vigilance, and accept the support of others. It was not, then or now, an easy process.

Even now, I make mistakes and can be overly protective. Sometimes, I forget that Samantha’s current in-home caregiver is very capable. Or that Samantha is almost 20 years old and needs time with friends, experiences that do not include her mother.

Letting Go

Letting go. All parents, regardless of a child’s abilities, need to let go as their children move towards independence. For the parent of a child with special needs, especially of kids who are non-verbal or need specialized care, this challenge is particularly difficult. Both parents and caregivers need to demonstrate patience.

Recently, a professional caregiver mentioned a parent who was resistant to letting her child go on outings, be alone with the caregiver, or let the child out of her sight. Consequently, the child would not respond to the new caregiver in any way, always deferring to the parent. The caregiver wanted to know, “What do I do?”.

My advice to the caregiver was to start small. To begin by taking short, specific outings with an end time in mind. To communicate about details and understand that the parent had to know these details for many years. To take photos of your outing, if possible and send them by phone, reassuring the parent that all is well.

My advice for parents is to start small, also. To spend some time outside the home without your child. To take a walk. To get coffee with a friend. To give the caregiver time to bond and learn about how to best care for your child.

This summer, my husband and I will be married 25 years-a significant anniversary, especially considering the challenges we have faced. We are planning a trip in the fall to  go away for a full week to celebrate. This will be the first time I have been away from Samantha for more than a few days. I am nervous but also realize that we have the supports in place to make it happen. Samantha is old enough to handle having me away for a week, whether or not I am ready.

Building up to a long trip away has taken me a very long time. A short time ago, I was the parent who was afraid to let her daughter out of her sight for a minute, sure I was the only person who knew what was best for her.

Accepting help and letting go. It is a tough lesson for many parents of children with special needs. So be patient and show grace. Give others the chance to be a blessing to you and your child, trusting that in the end God is looking out for us all.

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Karen Jackson is the Executive Director of Faith Inclusion Network (FIN) of Hampton Roads where she lives with her husband and three children in Norfolk, VA. She is also the author of Loving Samantha. You can connect with Karen at the Faith Inclusion Network page.

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How to Raise a Health Care Self-Advocate

How to Raise a Health Care Self-Advocate

by | Jun 26, 2017 | Advocacy, Different Dream, How-Tos, Special Needs Parenting

How to Raise a Health Care Self-Advocate

Once upon a time, my husband and I were our son’s sole health care advocates. For the first 4 years of his life, we faced numerous life and death decisions concerning surgeries, medical tests, and treatment. After those dramatic early years his health stabilized, and our decisions about his health care were more run-of-the-mill.

When he was 15, medical tests showed another major surgery was needed. When our son, who had grown into a strong-willed, intelligent adolescent heard the news, he made clear to us and the surgeons that he expected to be part of the decision-making process. At first my husband and I were taken back by his demand. And then we did the math.

In 3 short years, our son would turn 18, at which time he would be in charge of his own health. Therefore, we made everything regarding his upcoming surgery–the pre-op tests, doctor consultations, even life and death decisions–into a self-advocacy training exercise. Here’s what we learned about raising a health care self-advocate during that experience and as our son entered adulthood.

  1. Write down your child’s medical history. You may remember what treatments (for physical, mental, and emotional ailments) your child received, but your child won’t. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. That medical history equips him to be a health care self-advocate.

To read the rest of this post, visit Key Ministry’s Special Needs Parenting blog.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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IEP Tips from Parents for Parents

IEP Tips from Parents for Parents

by | Mar 16, 2017 | Advocacy, Different Dream, Special Needs Parenting

IEP Tips from Parents for Parents

A few weeks ago, I attended the Engage Conference sponsored by 99 Balloons. One of the workshop sessions was a panel discussion called Navigating the IEP. The panel consisted of 2 parents of kids with IEPs and 1 educator who often attends IEP meetings and annual reviews. The moderator, Matt Mooney, asked the members of the panel to share their best 2 pieces of advice for parents involved in the IEP process. Their answers were wise enough to merit passing along to parents getting ready for their children’s initial IEP meeting or annual review.

Joe’s IEP Tips

Joe first advised parents to be patient and willing to compromise on non-essentials. Parents are their kids’ biggest advocates and want a lot for them. But some requests aren’t reasonable or essential. For his son, that meant not pressing for inclusion in every subject area while insisting his son’s one on one paraprofessional move with him from grade to grade. Second, Joe reminded parents that whatever is in the IEP must be followed. So it’s important that what’s essential for your child is written in the IEP. Parents should then firmly, but without rancor, insist the IEP be followed.

Ashley’s IEP Tips

Ashley’s first piece of advice was to know what you want for your child. You know your child better than the educational experts do. You are also part of the IEP team and have the knowledge to customize the plan to meet your child’s unique needs. Several of the goals presented at her daughter’s initial IEP meetings were not appropriate for her child. So Ashley asked for time to read through the IEP, study the goals, and return at a later date with more appropriate goals. Her second recommendation was that parents try to cultivate a team atmosphere with the experts at the IEP meeting. Most likely parents will deal with the same team of experts for many years, and they really do care about their students. It’s in the child’s best interest to maintain good relationships with them.

Mindy’s IEP Tips

Mindy, who is an educator often present at IEP meetings, counsels parents to be well-informed so they understand what’s being discussed at the initial IEP or annual review meetings. The more informed the parents are, the more likely the school is to meet their children’s needs. She also reminds parents that communication can be hard at IEP meetings. If they can rein in their emotions, it makes a big difference.

Your Best IEP Tips

Okay, now it’s your turn. Leave a comment about your best IEP tips or your reaction to what Joe, Ashley, and Mindy shared. Thanks!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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5 Ways EA TEF Treatment Has Changed & 5 Ways It’s the Same

5 Ways EA TEF Treatment Has Changed & 5 Ways It’s the Same

by | Jan 19, 2017 | Advocacy, Different Dream, Special Needs Parenting

5 Ways EA TEF Treatment Has Changed & 5 Ways It’s the Same

My son was diagnosed with EA TEF a few hours after his birth. I’d never heard of the condition before May 23, 1982. In the years since then, I’ve thought about it every single day. In the past 3 decades, I’ve watched advancements that have made EA TEF treatment more humane and more successful. Here are some of the most exciting:

#5 Change: EA TEF Online

The internet made it possible for the EA TEF community to connect online in groups like Facebook’s Bridging the Gap and www.eatef.org. Parents can also learn about surgeons and treatment methods at children’s hospitals around the country and the world.

#4 Change: Anesthesia

Until 1986, newborns undergoing EA TEF repair surgery received no pain medication. Thankfully, that protocol changed a few years after our son’s surgery. You can read the whole story at Can You Imagine Infant Surgery Without Anesthesia.

#3 Change: Feeding Clinics

Feeding clinics are a godsend for kids whose EA TEF treatment results in oral aversion and feeding issues. They are a godsend for parents and caretakers, also, as parents who can’t get their EA TEF child to open their mouths for any reason.

#2 Change: The Foker Process

The Foker Processs is a breakthrough treatment that makes a huge difference for long gap babies. It actually closes the gap by growing the esophagus. Amazing, amazing stuff…and it makes sense!

#1 Change: G-Tubes

Our son’s feeding tube was a Foley balloon catheter. It was huge, cumbersome, ugly, and did the job. Modern G-tubes are small, tidy things with a tiny tummy button and cool syringes for administering feedings. If your child has a modern day G-tube, be very grateful.

While many aspects of EA TEF treatment have changed, many remains the same. Such as:

#5 Unchanged Thing: Complications

Kids with EA TEF are still prone to respiratory infections because of tracheomalacia. They also can develop esophageal strictures at point of repair and many have GERD.

#4 Unchanged Thing: Barky Cough

Parents of kids with EA TEF all over the world nod their heads when they read this one. We also recognize the barky cough (it truly does sound like a seal barking) that causes other parents to hustle their kids out of range of the germs they believe are the cause of the nasty cough.

#3 Unchanged Thing: Gifted Pediatric Surgeons

Gifted, highly trained surgeons save our children’s lives. Parents of kids with EA TEF are grateful to them every day we spend with our kids.

#2 Unchanged Thing: Worried Parents

Though the doctors and nurses continually remind parents that EA TEF repairs have a high success rate, parents like us can’t help but worry. Especially when complications arise. And they do.

#1 Unchanged Thing: Different Dreams

When parents hear their children have EA TEF, their dreams for their kids change. They dream of visiting their newborns in NICU instead of in the freshly decorated nursery at home. They dream of the day their babies will eat by mouth instead of a G-tube. They dream of more effective medications to neutralize GERD.

The unchanging truth is that our parenting dreams change, but our fierce love for them does not.
How Have You Seen EA Treatment Change and Stay the Same?

Leave a comment about the ways you’ve seen EA Treatment change while staying the same. I’d love to hear what you have to say.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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6 EA TEF Warnings Hidden from New Parents

6 EA TEF Warnings Hidden from New Parents

by | Jan 18, 2017 | Advocacy, Different Dream, Special Needs Parenting

6 EA TEF Warnings Hidden from New Parents

EA TEF Awareness Month is all about educating the masses about a rare and life-threatening birth anomaly. Today guest blogger and mom, Nanette Lerner educates new parents regarding 6 EA TEF warnings hidden by the well-meaning medical community.

6 EA TEF Warnings Hidden from New Parents

No one ever expects to have an EA TEF kid. The truth is, until you have one, you’ve probably never heard of the condition, ever.

What does EA TEF mean? It means that your baby is born unable to swallow due to a somewhat rare birth defect where the esophagus is attached to the trachea instead of the stomach. But what does it really mean? Until you’ve had a kid with it, you have no way of knowing.

Nearly 6 years ago on a frigidly cold January morning, our feisty, teeny TEF boy entered the world. He was 6 weeks early and at just 3 pounds, 13 ounces, the smallest baby our surgeon had ever performed a TEF repair on. Luckily, we didn’t know this fact until after the surgery was completed successfully. After that, we had 2 long, stressful months in the neonatal intensive care unit (NICU). And then a return to the NICU about 2 weeks later for his first dilation.

Almost 6 years and several hospital stays later, we’ve learned a lot. Some of it through trial and error. Some of it through the amazing TEF/EA community. I’m grateful to say entire days go by without thinking about the fact that our boy has TEF and all the complications that go along with it. But then he lets out a cough—that deep, echoing, barky cough—and the panic sets in again.

When he was born, we thought once his fistula was repaired, that would be it. All fixed! But as all TEF parents know, that is simply not the case. Here are 6 EA TEF warnings a few things nobody told us about:

EA TEF Warning #1: Oh, that cough.

That TEF cough. It doesn’t sound like anything else and it doesn’t necessarily mean your kid is sick. He could just be clearing food out of his throat. Or water went down too quickly. Or it could be he had a cold three weeks ago, and it still sounds like he’s got whooping cough.  In any case, the cough will earn lots of disapproving looks from parents who assume you are a terrible person for bringing your germy kid out in public. Expect to hear from worried teachers and alarmed school nurses. Try to ignore the glares and the judgements. Instead, remember that all those people don’t understand TEF. Most of them probably don’t even know what it is. Which brings me to my next point.

EA TEF Warning #2: Whether you like it or not, you are now an official TEF/EA educator.

No one’s heard of what your kid’s got? Okay, fine. That means it is your job to educate the world. When you get those dirty looks from a parent, explain exactly what your kid has.  Send the teachers/school nurses website links so they can understand what they are dealing with. We even printed out fliers about TEF for concerned parents at the playground. Turn an annoying moment into a teaching one.

EA TEF Warning #3: You will never look at food in quite the same way.

Once your kid starts eating real food, you will constantly evaluate it in choking hazard terms. Some foods are obvious (popcorn, grapes) while others seem innocent but aren’t. Watermelon was always a surprising culprit for our son; it was just soft enough that he probably didn’t chew it enough. Pizza with a bready, soft crust also proved to be a problem.

EA TEF Warning #4: Fall is the cruelest season.

Sad but true. Fall has the prettiest colors, the best holidays, and great apples. Unfortunately, it also comes with back-to-school germs that inevitably morph into a back-to-school cough. Of course, fall isn’t the only season your kid is susceptible to germs—ours wound up with a horrible flu that landed him in the hospital in June. June?! Who the heck gets sick in June?  TEF kids do.

EA TEF Warning #5: The scars you can’t see are worse than the ones you can see.

Yes, our boy has a serious scar from the surgery. It isn’t small and it sure isn’t cute. But that scar is what saved his life and it’s proof that he lived through it. However, he has emotional scars from being rushed to the emergency rooms so many times.  The fear when he has when he comes into contact with any medical professional. Having to pry him out from under a metal folding chair to get him his flu shot. Those scars suck, and they aren’t going away anytime soon.

As a parent, you will have emotional scars, too. I still can’t stand the smell of the soap in any doctor’s office since it reminds me of constantly washing my hands in the NICU.

EA TEF Warning #6: It gets better. Your kids get bigger.

They learn to handle the stuck food in their throat. They can communicate when they need help. One day, your kid will bite into a hamburger and you won’t get a panicked feeling as you watch him do it. Swear.

On the harder days, which luckily become less frequent, we remind ourselves that there are far worse things than EA TEF. Just remember this: your TEF kid is a work in progress.  Just like the rest of us.

What EA TEF Warnings Do You Have for New Parents?

What EA TEF Warnings would you add to Nanette’s list? Leave them in the comment box.

 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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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Nanette Lerner writes commercials, very long texts, occasional blog posts and young adult fiction. She lives in New Jersey with her husband and two children.

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Our EA TEF Adventure: A Journey with Our Son

Our EA TEF Adventure: A Journey with Our Son

by | Jan 12, 2017 | Advocacy, Different Dream, Special Needs Parenting

Our EA TEF Adventure: A Journey with Our Son

EA TEF adventure abounds when kids are born with this life-threatening birth anomaly. Guest blogger Maheen Tarver shares her family’s EA TEF adventure in this post in honor of EA TEF Awareness Month. 

Our EA/TEF Adventure: A Journey with Our Son

Our EA TEF Adventure Begins

After another night of near sleeplessness 31 weeks into pregnancy, I felt something warm and wet going down my leg. I opened my eyes and looked at the time on the phone. 6:59 AM.

“I think my water just broke!” I yelled to my husband, Wil. I stood up and a gush of water came pouring down, flooding our carpet.

The next 45 minutes became a blur as we rushed to the hospital and were escorted to the delivery ward. The doctors tried to halt my premature labor, and  he performed an emergency C-section 2 and a half hours after we arrived at the hospital.

At 10:08 AM on May 27, 2016, our son Waqeed Dean (WD) Tarver was born. I remember asking if he was okay, hearing that he was, and passing out.

Wil began calling family and friends with the news. I lay on the gurney, eager to hold my first born. A nurse grabbed Wil and took him out of the room while a doctor came in to talk to me. WD was being taken to surgery. I asked whether or not he would be okay. The doctor said he would be right as rain.

That night we learned our son had been born with a congenital birth defect, called Esophageal Atresia and Tracheoesophageal Fistula (EA TEF), along with Duodenum Atresia, in addition to typical preemie issues. He needed another surgery in 5 days. I didn’t worry much since the doctor had said he would be right as rain.

Our EA TEF Adventure in the NICU

5 days later, I went home without my baby, without having held him in my arms, without having touched him in his NICU isolette. Wil visited our baby daily and cared for me. We were alone in California, taking one day at a time while a few dear friends tried to help us. My parents in Bangladesh felt helpless. Wil’s parents in Georgia weren’t able to come until later.

I began blaming my obstetrician as I reflected upon my pregnancy. My anger turned into hours of crying. I blamed myself for not being proactive during pregnancy. I quit visiting WD. Wil said I was experiencing postpartum depression, but I was in denial.

I went to see my son when he was a week old. I caught myself wishing my baby had never been born. As soon as I realized what I was doing, I told Wil about it and constantly reminded myself that these feelings weren’t my true feelings, but chemical imbalances caused by postpartum depression.

I started visiting WD a couple hours a day and then for entire days. When WD was almost 1 month old, NG tube feedings began. Weeks went by with no improvement in the feedings because of GERD. He developed a wet cough. He had his first esophageal dilation without much success. The NICU nurses hinted about the need for a G-tube. They quit feeding him orally, and his need for oxygen assistance increased. The doctor’s “right as rain” promise was a hollow one.

I began researching EA TEF and premature babies. The more I read, the more I realized we needed to ask more questions. I began talking to the doctors and nurse practitioners and not just the NICU nurses. On WD’s due date, we finally sat down with the entire care team to discuss his care plan. They explained why he needed G-Tube and Nissen fundoplication surgeries. We asked questions and soon realized WD would come home only after he had the surgeries and that we would need to provide consistent care at home.

During surgery, WD was diagnosed with more anomalies. He experienced several complications during his recovery, but eventually became more stable. We tried to control our excitement and learned feeding tube management as we prepared to bring him home. On the 100th day of his NICU stay, Waqeed Dean Tarver came home.

Our EA TEF Adventure at Home

WD flourished for several months. Wil and I learned new things every day about bottle/nipple compatibilities and signs of retching/gagging. The best part was enjoying our son every minute of every day.

WD improved until October of 2016 when he went from taking most of his food orally to taking no food at all. His reflux returned, and it became evident his Nissen fundoplication had failed. Eventually, we moved to Massachusetts to be closer to Boston Children’s Hospital. The doctors there put him on some new drugs, and he is slowly improving. A few more issues have been found, but we are optimistic WD will continue to make progress.

An EA TEF Adventure Should Not Be Attempted Alone

Many parents of kids with EA TEF feel alone because it is a rare defect. It can seem bleak. It can feel like you are the only parent whose child who is not being properly treated or that no one understands your pain. Please know that you are not alone, that others have gone before you and are with you.

We learned much from other EA TEF parents on the internet. I am thankful for all of them. It takes a huge effort for me to share our story. But this is my way of coping–to tell about my son’s condition and to assure parents that it is okay to feel what they feel. After all, we are human.

Both my parents and my in-laws told me one thing that stuck with me. “Whatever God gives you, it is to make you a better human being.” I truly believe that this experience has a purpose in our lives and is going to make WD and us better human beings. I want you to know that you are blessed with the love of your little one. You too can stay positive and educate others about EA TEF.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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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Maheen Tarver is a Bengali Muslim born and raised in Bangladesh.  Before she was a full time, messy bun, no makeup, super-busy mom, she was a project coordinator in Bangladesh educating underprivileged, young garment workers about health, safety and environment. She lives with her husband William and son Waqeed Dean (WD) in Massachusetts. Maheen now spends her researching EA/TEF and encouraging other EA/TEF moms to become advocates for their children.

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