Beyond Labels: Seeing the Beauty in EVERY Child

Do you ever feel like your child is looked down on because of their disability or special need?

In the world, you often see a differentiation between the “haves” and the “have nots.” Those in sports are esteemed more highly than the shelf stocker at Walmart. The advice of those with the largest following on social media or YouTube is more sought after than the grandfather or grandmother up the street.

Sadly, this can even be true at churches. I hear of many parents on this journey in special needs walking through the church doors looking for community and eventually walking away because they are made to feel like their child is a burden. Congregation members treated their child as less than and not really valued.

If this is your story, I’m sorry. This Easter season, I want to assure you that God does not see your son or daughter as less than.

Here are 5 ways that we can see this in the Bible. 

1. Your child is created in God's image

"So God created mankind in his own image, in the image of God he created them; male and female he created them." - Genesis 1:27 (NIV)

This verse reminds us that every person, including those with special needs, is created in God's image and is therefore uniquely valuable and important in God's eyes.

 

2. God sees beyond physical limitations

“But the Lord said to Samuel, ‘Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.’”

– 1 Samuel 16:7 (NIV

While human beings often focus on physical appearances and abilities, God looks at the heart. He sees beyond a person's disabilities to their true character and potential.

3. God sees my child's struggles and cares for them

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18 (NIV)

As a parent, it can be heartbreaking to see my child struggle with challenges or disabilities. But I take comfort in knowing that God sees their struggles and cares for them deeply. God is close to those who are brokenhearted, and I believe that He is with my child every step of the way.

4. We are all equal in Christ

“There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.” – Galatians 3:28 (NIV)

In this passage we can see that in Christ, there is no distinction between people based on their race, gender, or social status. This includes people with disabilities, who are equal members of the body of Christ. God values each person equally and desires for us to love and accept one another just as Christ has loved and accepted us (John 13:34-35).

5. God has given your child a unique gift or talent to share with the world

"Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms." - 1 Peter 4:10 (NIV)

This verse reminds us that every person, including those with special needs, has unique gifts and talents that can be used to make a positive impact on the world. By valuing and nurturing these gifts, we can help our children to realize their full potential and make a positive difference in the world around them.

This Easter season, as we celebrate the death and resurrection of our savior, I want to encourage you that not only does our heavenly father know and love you. In the same way, He fully loves your son or daughter. He does not view them as a burden or less than.

He tends his flock like a shepherd:
    He gathers the lambs in his arms
and carries them close to his heart;
    he gently leads those that have young.

~ Isaiah 40:11 (NIV)

Written by Jonathan McGuire

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Jonathan McGuire  is the dad of two boys and co-founder of Hope Anew, a nonprofit that guides the beat up, battered, and worn out parents of children impacted by disabilities and special needs through the spiritual and emotional challenges they face to Christ-centered hope and healing.

A 19 Year Old Revelation

I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation.  I recently realized that even though I thought I had it "all together", I really don't.  I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.  

This revelation was uncovered recently during a conversation with my therapist.  I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years.  This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful.  This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks.  While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note:  Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)  

My therapist has spent time getting to know me and what parts of my life have been difficult.  In my last session, I began telling her about Ben.  I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and  how I respond to him now.  As I talked I could feel my anxiety rise.  I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.

After she helped me calm down and relax, she made a pretty stunning observation.  She said "I believe Benjamin is the cause of your permanent anxiety.  You have PTSD and I think you are still dealing with the grief this has caused in your life.”

I was shocked.  I am thankful for him and I clearly recognize how he has blessed my life and others.  I feel equipped to help other special needs parents deal with a new diagnosis.  I even write about all the ways that Ben has expanded my life.  But, my therapist thinks that I have unresolved issues?  How could this be? 

In January of 2002 the diagnosis for Ben was determined about a week after he was born.  As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible. 

As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in  therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis. 

Now as I sat in the therapy it began to make sense. I have a special needs son.  A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live  in a constant state of “waiting for the other shoe to drop” and can at times  feel the emotional spiral. 

 I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful.  I know that it’s relentless and traumatic in nature.  But, I know where it comes from now.  This awareness will also help me manage my anxiety.  I know that I can "fix” some things for him, but I can't address it all.  

Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day.  We want to do the best for our children and be "on top of our game".  But, we also have to recognize where we need support.  I have a great therapist now.  I have also joined Facebook groups to find parents who “walk my walk”.   I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how. 

As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times.  Make sure to ask for help and be willing to accept it. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

The Waiting Room

Before I had children waiting rooms served one purpose.  They were a place to wait.  I’d look forward to those few quiet moments to flip through the pages of a Better Homes and Gardens stashed in the pile of outdated magazines.  I would exhale.  I would zone out.  I would be still.  Then, I would hear my name called and forget I was ever there. 

As a mom, and especially as a special needs parent, I very often find myself in waiting rooms.  However, the waiting is altogether different…

When I’m waiting for my child to complete testing with the school psychologist, or finish a session of occupational therapy, or therapeutic gymnastics, or swimming lessons, the list goes on, it’s never a time of exhale. I am zoned way in.  I am far from still.   It’s often a time of held breath.  It’s a time of anxiety.  I am almost always lending one ear to the task of waiting for signs of the session going awry or hear myself be beckoned to the room.  I can pretend to flip through the pages of a tattered magazine left for waiting parents, but it’s just to fill the time with any kind of distraction.  That is, unless there is another waiting parent there.  That’s when magic happens.

In these places of waiting, special needs parents find each other.  We are all so desiring of community and relationship with people in our same, or similar situation, that when you sit two of us in a room together, we just get to chatting.  A smile.  A greeting.  Then, before you know it, you’ve exchanged stories, you have shed the anxiety that you may have entered the waiting with and are sad when the waiting time ends.  You might, in the case of a recurring appointment, get to see this parent again. You might not. 

Regardless of that, in the midst of these sometimes frantic days, you connected with someone who gets it.  You were given the gift of a pause, a judgement-free exchange and probably even a shared laugh or tear.

I skip out of these chance meetings feeling so heard and so understood and with such an incredibly full cup.  What’s even more magical is when a bonafide friendship begins to form in the waiting room.  I’ve experienced that a few times on this road.  Imagine that, meeting a person in a waiting room, of all places, and bonding nearly instantly over this shared journey.  You just never know who might be waiting with you.  

I can admit that those peaceful days of leisurely and seemingly carefree times of solitude and reflection were nice.  Okay, very nice. They were maybe even dreamy.  I can share too, that this new type of waiting is far more fulfilling. 

If you find yourself waiting nervously for your child to finish up their speech session, pick your head up from that magazine, or from your phone, and look around that room.  Drum up some conversation with the parent next to you.  Even if it feels clumsy or awkward at first, don’t let that stop you.  Push through and take a chance. Odds are they are desiring connection, too.  You will both be blessed by interacting, and you may just make a treasured new friend.  

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

You Are Not Alone – Join a Group that “Gets It!”

A friend looked at me and said, “Your whole faith foundation is shaking, as if you have no firm ground to stand on, isn’t it?” She’s the only one who knew and I hadn’t told her. I was so fearful others would find out I was questioning God and the very building blocks of my faith in Him. I was so ashamed I had these questions and doubts. My relationship with God had been my entire life. It had shaped my education, life goals, and daily rhythms. And now, I didn’t know what was true anymore.

Oh, I knew the book answers. I had graduated top of my class with a B.A. in Bible/Theology and another with a M.A. in Biblical Counseling. I went to a good Bible-teaching church, but it wasn’t meeting me where I was at. It didn’t get to the practical daily life questions that had become my struggle in the two years since my son with additional needs had been born and my world had flipped upside down. I felt so alone. Alone with my questions. Big, deep, scary God-questions. Doubts. Fears. Struggles. Life circumstances with no apparent answers. No way out.

My friend promised to pray for me, no judgement, just loving concern. That’s the best response she could have given. My questions were so deep that quick, simple answers were not going to solve them. It’s been over ten years since that conversation. I spent many of those years wrestling with God. I’ve found the answers to my faith questions and my relationship with God is stronger and truer than it was before.

As my husband, Jonathan, and I have talked with other parents of kids with disabilities or special needs, we’ve learned that I was definitely not alone with my questions and struggles. Questions and struggles not only in relation to God, but also in relation to how to navigate this life as a parent with a child who has additional needs. But, who do we go to with our questions? Who do we go to for support on days when life is overwhelming and often others just don’t “get it”?

Hope Anew is launching an online community for parents of kids with disabilities or special needs. A laugh together, cry together, pray together community.  

• Some features of the community include:

• Forums/Chat room

• Subgroups for more specific areas of interest (residential care, adoption, etc)

• Quarterly master classes

• Soul Care events with sharing and prayer

• Answers to questions that can’t be googled

• Monthly themes related to parenting kids with additional needs

• And more…

Come join us in the Hope Anew Online Community, where together we are building the most encouraging, real, hope-filled way for parents of children (of all ages) impacted by disabilities or special needs to engage with a group that “gets it!”

For more information go to www.HopeAnew.com. You can also find us on Facebook and can glean from others who have walked this path on the Hope Anew Disability Podcast.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Who Is Your Tribe?

It was 2012, South Sudan (a country in Africa) was only a year old at that point. I was in a refugee camp on the border of South Sudan and Sudan. Refuges were flooding into the camp daily by the thousands, as tanks were attacking only 8 km away.

 I met Beauty as I was helping lead a trauma healing program for the refugees. Beauty came to our workshop so she could be trained to help her family and tribe deal with their pain, sorrow and loss. Beauty was in so much emotional pain. It was not uncommon to find her staring off in the distance, no emotions showing and even slightly turned away from the group as she wrapped herself in her cloak, as if to hide from the rest of the world.

 In the afternoon, our group would end and each participant would return to where they were staying in the refugee camp and at night, you might be surprised by what you would find. You would find Beauty with those members of her tribe and family that made it to the refugee camp. You would no longer see a stoic Beauty with flat emotions. Instead, you would be greeted by the sight of Beauty dancing and singing to the beat of the drums with the other survivors in her tribe.

This dancing and singing could be heard on a nightly basis and was not restricted to Beauty and her tribe. As I lay there in my tent at night, the sounds of drums beating and people singing could be heard rising from all around the camp.

As a parent of a child with special needs, there have been many days where I felt like I was in survival mode. There have been many days where I didn’t have the strength or energy to deal with the emotions that I was experiencing. There have been days where I wish I could wrap myself up in a cloak and turn away from it all. Using it as a protective wall that I could hide beyond and not have to face the reality of what it meant to be the father of a son with special needs. The pain he was in constantly. The impact that caring for him was having on my wife. The extra pressures that we had of not being able to pay for needed treatments.

Can you relate to this?

Let me ask you, who is your tribe? Who is your community? Who are those people that you can let your cloak down with and be real with?

 When we are grieving, we can’t bury the pain but we also can’t let our pain define us. When we are under stress beyond what we can bear and think that we will collapse if we get one more piece of bad news, we need that tribe. We  need that community that “get’s it,” that community who already knows our pain because they have been through it. That community that we can be with, without always diving into the drudgeries of the day and know without saying anything that they understand. That group of people that you can be real with, laugh with and even dance with to the beat of a drum.