The Weight of Silence as Parents of Kids with Invisible Disabilities

The Weight of Silence as Parents of Kids with Invisible Disabilities

The Weight of Silence as Parents of Kids with Invisible Disabilities

The weight of silence as parents of kids with disabilities is all too familiar to guest blogger Lisa Pelissier. In this post she explains why she and other parents don’t talk about what’s going on with their kids and why they might want to rethink that decision.

The world of special needs parenting is broad and diverse. Some of us are thrust into a world where we’re forced to wear the special needs banner day in and day out.

However, those of us whose children have invisible disorders—high functioning autism, ADHD, mental health issues, and more—have a choice about broadcasting our special need status. Do we choose to stay silent, to blend into the crowd, or do we choose to align ourselves with the special needs population?

3 Reasons We Stay Silent

There can be stigma associated with invisible disorders, especially mental health issues. Historically, people have regarded anxiety and depression as character flaws. They often are subject to comments like ‘If your child wasn’t weak, she wouldn’t be anxious.” Or “If you trusted God more, you wouldn’t be depressed.” There can be shunning that comes along with any invisible disorder. You’re different. You “ride the special bus”—used as a pejorative. As parents, we also receive blame. People say things like, “If your child has anxiety, it’s because you’ve been an abusive parent, or at the very least, a bad one.”

Who needs that? It’s easier to keep our mouths shut.

We don’t want our kids to label and therefore limit themselves. Autism doesn’t mean you can’t have friends. It doesn’t mean you can’t have empathy, we think. If my child wears his diagnosis like a name tag, he may use it as an excuse for why he doesn’t have to reach out to make friends, have to have compassion for others, or excel at his studies.

We want our kids to achieve their full potential. Why shout out diagnosis instead of ignoring it and hoping for the best?

A third reason we stay silent is because of our own denial of our children’s conditions. He’s not autistic, he’s just quirky. She’s not depressed, she’s just hormonal. It’s not ADHD, he’s just disobedient. Accepting a diagnosis comes as a blow to our hopes and dreams for our child.

Like the title of this website states, we have to find a “different dream”—something that can be difficult and painful to do.

2 Reasons We Shouldn’t Stay Silent

Invisible disorders are real. While it’s true that kids can be quirky, hormonal, and disobedient, it’s also true that kids can have real diagnoses of autism, depression, and ADHD, and those conditions can and do affect thinking and behavior. We do our kids a disservice when we deny their reality. Helping them learn about their condition and how it affects their thoughts, feelings, and behavior will give them the power to understand, learn, and grow—and to manage their health rather than pretend there isn’t a problem.

We can help others understand why our kids are different so they can be more accepting.

Many choose silence—until someone else speaks up. Being up front about depression, anxiety, OCD, ADHD, and other invisible disorders gives others permission to speak about their own difficulties. This can be especially true in the case of disorders we in the church may try fervently to hide because of shame and grief, such as in suicidal ideation. When you say, “this is my reality,” you find that others in your circle of acquaintance have been there too, even if they’re not ready to go public with it.

Where you expected to find condemnation and rejection, you find understanding, solidarity, and friendship.

As special needs parents, our burdens are heavy. Keeping them to ourselves not only deprives us of support, of someone to help us bear those burdens, it deprives others of the chance to grow in their own knowledge, understanding, and compassion.

You are not alone if your child is crippled by anxiety.
You are not alone if your child has attempted suicide.
You are not alone if your adult child who can “pass” for neurotypical can’t get their life together.
You are not alone if your child is too depressed to get out of bed in the morning.

But if you keep your troubles hidden, you’ll never know what kind of love and support you’re missing. You’ll never know if by speaking the truth, by freeing yourself from the weight of silence as parents of kids with invisible disabilities, you may give someone else a boost out of their own pit of silent despair.

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Lisa Pelissier lives in Oregon where she is a homeschool mom and author of five middle-grade fiction novels, the second-grade Monsters series, and a YA fantasy novel. Lisa owns SneakerBlossom Books, offering Christian, classical homeschool Study Guides and curriculum. She blogs at Eleventh Willow, offering encouragement for Christians parenting the mentally ill. She also works as a freelance copy editor, copy writer, an artist, and a marketing editor. In her spare time Lisa enjoys playing the piano and fretting about things over which she has no control. 

Author Jolene Philo

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How to Build a Thriving Marriage as You Care for Children with Special Needs

How to Build a Thriving Marriage as You Care for Children with Special Needs

How to Build a Thriving Marriage as You Care for Children with Special Needs

Todd and Kristin Evans know that tending to marriage while raising a child with disabilities can be challenging. About 12 years ago after their medically fragile daughter arrived, they decided to give their marriage one more shot before admitting defeat. In their new book How to Build a Thriving Marriage as You Care for Children with Disabilities, they invite parents to join them on a journey toward wholeness in marriage, parenting, and faith.

Early in our marriage, we discovered building a strong marriage can be difficult. But when our medically complex daughter was born, we began to face even more obstacles to staying connected. We learned the hard way that when special needs parents are not intentional, their marriage may be headed toward disaster. We’re sharing three challenges you may also be experiencing and simple ways you can grow a thriving marriage while parenting your child with special needs.

  1. Commit to a check-in time every day.

As special needs parents, you likely have more to discuss and more serious decisions to make than the average couple. Intense conversations about your child’s needs can easily push out time to engage in more intimate conversations.

Research shows when special needs parents set a consistent ten-minute check-in time every day, their marriages grow stronger. To ensure you have time to connect on a deeper level, agree on a specific time each day that you can set aside all distractions to focus one another. This might be talking on the phone or video chatting over lunch or after the kids are in bed. When you both commit to honoring this time, you will begin to feel more cared for and look forward to those moments. Guard this time and make it a priority.

  1. Regularly manage stress individually and as a couple.

As special needs parents, you likely experience intense daily stress. When your bodies remain in a chronic state of stress, your emotional and mental health can suffer, you can begin to experience physical symptoms, your marriage relationship can become strained, and your physical intimacy may drastically decrease.

In writing our new book, How to Build a Thriving Marriage as You Care for Children with Disabilities (Baker Books), we learned that regularly managing your own stress in healthy ways and supporting your spouse in coping with their stress can greatly improve your marriage. Individually practicing deep breathing, progressive muscle relaxation exercises, and physical activity are very effective ways to reduce your stress levels.

These are some simple ways we destress together that might help you as well:

  • Find a quiet place outdoors to hold hands listening to your surroundings, even if for just five minutes.
  • Go for a walk.
  • Watch a funny show, tickle one another, or swing on a playground.
  • Give your spouse a neck or foot massage.
  • Take a hot, scented bath or shower.
  1. Intentionally build an outside support network.

Caring for your child can easily isolate you and make it difficult to find support and respite. It may feel impossible to find time alone or get out of the house together. Yet, receiving both emotional and practical support can greatly decrease your stress levels and strengthen your marriage. We encourage you to keep searching for different resources. Here are some ideas for finding support:

  • Find local churches with a disability ministry, caregiver support group, or respite program.
  • Contact your state respite coalition
  • Call local college nursing or special education departments for potential caregivers.
  • Talk with other special needs parents about swapping child care

We encourage you to take the first step to strengthening your marriage by choosing one of these ideas and trying it with your spouse today. You’ll find many more ideas in our new book How to Build a Thriving Marriage as You Care for Children with Disabilities, which we hope will help you as well.

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.

References

Jake Johnson and Fred P. Piercy, “Exploring Partner Intimacy Among Couples Raising Children on the Autism Spectrum: A Grounded Theory Investigation,” Journal of Marital and Family Therapy 43, no. 4 (October 2017): 644-61, https://doi.org/10.1111/jmft.12247.

Linda M. Raffaele Mendez, Karen Berkman, Gary Y. H. Lam, and Charisse Dawkins, “Fostering Resilience Among Couples Coparenting a Young Child with Autism: An Evaluation of Together We are Stronger,” The American Journal of Family Therapy 47, no. 3 (2019): 165-82, doi:https://doi.org/10.1080/01926187.2019.1624225.

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Kristin Faith Evans, MA, MS, LMSW and Todd Evans, PhD, MA

Dr. Todd and Kristin Evans are award-winning authors, speakers, and parents of two children with complex needs. Their new book, How to Build a Thriving Marriage as You Care for Children with Disabilities releases in May 2024 by Baker Books. They both earned their MA in Christian Formation and Ministries at Wheaton College in Illinois and have served together in full-time ministry in church, camping, and retreat settings. Todd received his PhD from Vanderbilt University’s School of Engineering and currently manages his own business, and Kristin earned her MSW from the University of Tennessee and is a Licensed Master Social Worker experienced in couples, child and family, substance abuse, and crisis counseling. Connect with Todd and Kristin and learn more about their ministry and free resources at www.DisabilityParenting.com.

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How Do I Discern if Medication Is Best for my Child’s Behavioral Needs?

How Do I Discern if Medication Is Best for my Child’s Behavioral Needs?

How Do I Discern if Medication Is Best for my Child’s Behavioral Needs?

How do I discern if medication is best for my child’s behavioral needs? Many parents, including guest blogger Heather Braucher, wrestle with this question. In this post, Heather explains the process she and her husband used to make the choice that was best for their kids.

These days it seems every aspect of parenting requires black and white thinking. For example, will you deliver your baby at home or in the hospital? After your child is born, will you breastfeed or bottle feed?

The choices then continue:

    • Sleep train, or co-sleep?
    • Vaccinate or not?
    • Homeschool or public school?
    • Gluten free or traditional diet?

When a parent faces the decision of whether or to medicate their child for mental conditions, they may feel like they’re navigating raging rapids as they work through questions like:

    • What about the side effects?
    • Will they be on this forever?
    • What if it doesn’t work—or makes it worse?
    • What about the stigma of being on medication?
    • Could the food they eat/don’t eat fix this instead?
    • Should I get my child tested for food allergies?
    • Should I go the holistic route instead of western medicine?

Parents trying to figure this out should not be concerned about what side they are on, but what is best for their child. And to realize that sometimes decisions are not all black and white, but in fact are more fluid.

I have walked this road with all 3 of my children.

My 10-year-old son who has Autism, ADHD, and Anxiety began with the diagnosis of Sensory Processing Disorder (SPD). I asked, “How will I know if he is managing more than SPD? How will I know if he needs medicine?” The doctor’s reply was, “You’ll just know.

We spent two years watching him, supporting him, and managing his SPD. We did sensory integration therapy. We went gluten free when his behavior became dangerous and debilitating. I felt overwhelmed by how difficult it was to support him, while also making sure that my husband and our other two children were healthy.

When our 8-year-old son was mainstreamed in kindergarten after two years of therapeutic school for children with hearing loss, we were amazed by his progress he made after receiving cochlear implants, listening and spoken language therapy, and occupational therapy. But when he was unable to finish the school year due to behaviors that resurfaced the following school year, a diagnosis of ADHD with a prescription for medication resulted, our despair was heavy.

Then our 12-year-old daughter, the neurotypical one, was diagnosed with OCD rather than anxiety. When medication was prescribed, I felt like I’d been swallowed up in a deep dark abyss.

My mind raced:

    • What is happening to my family?
    • Are all three of my children going to be on medicine?
    • Is nature or nurture really to blame?
    • Should I do a hard reset on the nutrition for my entire family?
    • Do we need to detox from heavy metals?
    • Where did I go wrong?”

As I asked myself “How do I discern if medication is best for my child’s behavioral needs?” I implemented these consistent processes.

#1: I Took My Time

I prayed and waited for the Lord to place peace on my heart over the choices in front of me. The time between the recommendation of medicine for each of my 3 children and the actual taking of it was anywhere from 6 months to 2 years.

#2: I Provided What I Could

I read books, consulted with other parents, utilized therapies, and implemented what I could at home. I created calming zones with fidgets galore, posters, children’s books on emotional regulation, and sensory baskets and even created our own mini-sensory gym.

#3: I Researched Nutrition and Supplements

Nutrition is a huge component to many physical and mental health issues. I had already removed dairy from my diet in order to breastfeed one of my children who had extreme colic. We explored bloodwork and cheek swab testing, we removed gluten and folic acid for some kids, we tried essential oils and implemented supplements like magnesium and protein. We made multi-green rich smoothies.

#4: I Paid Attention to My Children’s Cues

When each of my children burst into tears, put their heads in their hands, and said…

“I just can’t.”

“I don’t know what’s wrong with me.”

“I’m just a bad kid.”

…I knew it was time to consider additional medicinal support.

Everyone’s experience is different. I do not judge parents for the route that they choose to take. For us, medicine has been a game changer when combined with therapeutic support. I believe that the chemical adjustments have created new neural pathways. They allow the brain to receive new information and be trained with new ways of doing things reinforced by therapies or counseling.

My children are now experiencing victory in many areas. Medication has impacted their lives immensely. But I also know that the gut and the brain are connected. My journey of understanding how we can heal and move forward using the foods God has given us and abstaining from the foods that may hurt is going to be pivotal.

I am excited for the next steps in the journey, because this is a journey. A friend so sweetly reminded me recently that we need to attend to both the mind and the body.

Remember that however you answer the question “How do I discern if medication is best for my child’s behavioral needs?” depends on what works for you and how the Lord guides you.

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Heather Braucher is a member of the “Braucher Bunch” aka her energetic family of 5. The bunch includes her husband and their three children, all of whom are dominant and extroverted and are going to change the world (if she can keep them alive!) She has always held a passion for writing, but motherhood has given her a reason to share her experiences, heartaches, and victories with others. In her writing you will hear stories of hope as well as grief, as her family has navigated life in ministry in the US and overseas, all while discovering that 2 of her children have special needs. Her desire is to provide others with connection, understanding, encouragement and laughter, all washed with the love of Christ.

Author Jolene Philo

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How Do I Teach my Kids to Interact with People Who Have Disabilities?

How Do I Teach my Kids to Interact with People Who Have Disabilities?

How Do I Teach my Kids to Interact with People Who Have Disabilities?

“How do I teach my kids to interact with people who have disabilities?”

The question came during an interview with the hosts of the Music for the Soul podcast. While I composed an answer in my head before speaking, I also thought to myself, “What a great topic for a blog post.”

Once the interview was over, I jotted down what I’d said and added more tips as they came to mind. The tips below are geared for kids, but they can be adapted for adults who act uncomfortable around anyone with disabilities and special needs—kids, adults, and senior citizens.

  1. Model disability etiquette to your children and others. In addition to watching how you employ the tips listed below as you interact with people who have disabilities and special needs, they hear how you speak. They notice your inflection and tone of voice. They can see if you are at ease or uncomfortable, patronizing or respectful, so try to be a good role model.
  2. Talk to the person with the disability rather than to their caretaker or interpreter even if they give the answer. Doing so shows the person that you value them and want to hear from them.
  3. Start by having your child introduce herself. Once again, this conveys respect for your child’s voice and helps the person she’s talking to know who to speak with.
  4. Allow your child to ask the person about his disability. Kids are curious and uninhibited. They will bring up the disability elephant in the room that adults are too “polite” to mention.

To read the rest of How Do I Teach my Kids to Interact with People Who Have Disabilities?, go to the Key Ministry website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Gratitude and Lent

Gratitude and Lent

Gratitude and Lent

Gratitude and Lent became paired in the mind of guest blogger Valeria Conshafter. In this post she explains how being the mom of a daughter with special needs led her to a powerful practice she implements every year.

Lent has always been a time of reflection and contemplation for me. It’s a time of confession and repentance, sacrifice and fasting. But I must be honest, I have had too many times where I forgot to follow through with this very important Christian practice.

Some years ago, my husband and I went through a very difficult and traumatic experience with our special needs baby. Struggles and challenges were right in front of my face. Christ felt so far away and my capabilities to commit to Lent and take in another form of sacrifice were nearly impossible.

For many years, I had only focused on my day-to-day life, mothering my child and trying to survive hospital stays and a multitude of diagnoses my baby girl had. All too complex to understand. Too stressful to even mention. Our lives had turned upside down so fast from the moment we got the news.

Your daughter was born with a rare birth defect and needs immediate surgery.

Trying to make sense of anything else was the hardest experience we had ever faced. Taking on any additional tasks besides caring for my child, such as engaging in a particular spiritual practice like figuring out what to give up for Lent, was a major undertaking for me.

I felt bad about this for a long while, comparing myself to other moms who appeared to have everything together. They had plenty of time in hand to figure out what they were giving up for Lent and what their families would do together during this very-important-in-your-kids’-life season. I was barely able to keep my nose above water. Jealousy, hatred, and feelings of inadequacy—not to mention depression and anxiety—flooded my being each time I compared myself with everyone else.

Thankfully, I soon realized that my attitude wasn’t serving me or the God in whom I believed. However, the struggles and challenges, the sleepless nights and tense weeks spent in that cold hospital room, Lenten season in and Lenten season out, God became evident to me in every procedure my baby had and in each complication she faced.

Even when my brain could not focus on anything else, God showed up.

Whether I sought him or not, he was there all along. The same God who had blessed me with this very special little baby girl to love and care for, birth defects and all, who had trusted me to be her mommy and caretaker, never left our side.

It was then, during what I call a Holy Spirit awakening, I decided to follow what worked for me.

I knew the medical hardships and trials with my daughter would surely continue. But I also knew that God would not abandon us. I felt an immense gratitude in my heart—gratitude that filled my soul with hope and peace. I integrated myself into my own gratitude and Lent discipline. Gratitude would become my day-to-day commitment as an act of repentance and sacrifice—my way of staying connected with Christ.

Gratitude and Lent. That is what I needed. Come as you are, with all that you have, with a grateful heart.

  • I am grateful to be her mom.
  • I am grateful for my daughter’s health and her good spirits despite the ups and downs.
  • I am grateful for a husband who supports me and cares for me.
  • I am grateful for the doctors and nurses who provide the best treatment for our girl.
  • I am grateful for moments of quiet and calm after the storms have passed.
  • I am grateful for the laughter and play after pain and tears are gone.
  • I am grateful for answered prayers and the peace within that surpasses my own understanding.
  • I am grateful for our merciful God and his never-ending grace.
  • I am grateful for what has passed, for today, and for the future. For God’s love never fails.

What are you grateful for during this season of Lent?

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Photo courtesy of Valeria Conshafter

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Valeria Conshafter is a native of Brazil. She has a background in Counseling Psychology and currently works for a women’s organization providing emotional and spiritual support to women all over the country. She loves writing, cooking, and praying for her family and friends. Valeria lives in Houston, Texas, with her husband Todd, their 15-year-old daughter, Sofia, and their two Standard Poodles, Chocolate and Oreo. You can find Valeria on InstagramTwitter, and Facebook.

Author Jolene Philo

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Choosing Acceptance and Advocacy as Parents of Kids with Disabilities

Choosing Acceptance and Advocacy as Parents of Kids with Disabilities

Choosing Acceptance and Advocacy as Parents of Kids with Disabilities

Choosing acceptance and advocacy as parents of kids with disabilities takes time. Today’s guest blogger, who wishes to remain anonymous, talks about making that choice as a parent many years ago and using what she learned to assist parents of her students who are struggling to make that choice today.

There’s nothing to worry about.

This ordinary statement, from the lips of the pediatrician, a few hours after my daughter’s silent birth, cut my life into two halves.

Before, I was an unsuspecting mother to be with an I-can-handle-it approach to life. A happy-go-lucky Christian woman who somehow thought faith was a shield to protect her from the worst life has to offer.

But as I absorbed this statement, somehow, in my core I knew that this pediatrician was mistaken, and so was my worldview. There definitely was something to worry about. My precious daughter was fighting for her life, and I had better start fighting for it too.

The events that transpired are another long story, but in a nutshell, our daughter was correctly re-diagnosed with EA/TEF in another hospital. Then, at three days old, she underwent a successful repair operation.

We could finally breathe again.

However, her struggles did not disappear. The months and years after her birth saw her back in hospital again and again with alarming frequency, as she coped with pneumonia, chest infections, and food blockages. Meanwhile, she struggled to swallow on a daily basis. My preconceived ideas of family life were turned upside down and inside out as I just struggled to feed her and stagger from one round of antibiotics to the next.*

So that pediatrician’s statement had well and truly thrown me into the second, more sober half of my life. 

I don’t hold any hard feelings towards him. After that surgery, I went back to the first hospital to find him. I explained the diagnosis, I hope, kindly. He had not read my medical notes which stated I had polyhydramnios (too much amniotic fluid) during my pregnancy. I later learned this was a warning sign of EA/TEF.

Fast forward 19 years and here I am, an Early Years Teacher. Sometimes this job entails the unenviable task of conveying difficult messages to parents.

  • Have you noticed anything unusual about your son’s development in comparison to that of his brother?
  • Have you considered a hearing test?
  • I would like to suggest you consider an assessment for your child.

These words, even when delivered with as much sensitivity as a teacher can muster, can be met with resistance and even anger. I have experienced more than once that, as the teacher, I can be the target of the anger.

I understand this.

Our daughter’s diagnosis meant that acceptance was thrust upon us in that moment. EA/TEF is a physical issue making swallowing impossible without surgery. Despite the challenges, we were able to move on towards coping with the situation by first accepting it. Other diagnoses can be more nuanced, more open to interpretation. Acceptance can sometimes be put off for a while.

Author Jocelyn Soriano says, “Acceptance is the shortest route to peace.”

  • Accepting that your child might be neurodivergent.
  • Accepting that your child might have extra physical challenges.
  • Accepting that we sometimes need, as Jolene has shown us, a different dream for our child.

Professionals might not always be sensitive or even right. But some of us do know the weight of our words. We know they have the power to cut a life into two halves. We do not speak for the fun of it. We speak out of necessity and in the best cases, with compassion.

These words are an uncomfortable but essential invitation to acceptance. 

So, if you are struggling with something a doctor or teacher has told you, don’t waste time or energy focusing on what the professional said or did. Choosing acceptance and advocacy as parents of kids with disabilities will help your family move forward. Your child needs your focus and energy to be on them. So be courageous. Find out the truth, accept it, and fight for your child.

*Everyone’s journey is different, but for us, life didn’t stay in that dark place forever. With the help of Christian friends and family, we slowly came through it. We are thankful that now our daughter is now an independent woman who lives a full life and can’t remember the last time she was on antibiotics.

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The author of this post wishes to remain anonymous.

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