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.

Celebrating Easter with 7 Sensory Friendly Ideas

What was Easter like for you growing up?

 I remember waking up Easter morning and going to church. Spring was in its beginning stages and there was a general excitement in the air as we celebrated Christ’s resurrection. The church would be stuffed to capacity with families sitting shoulder to shoulder in the pews. After church we would make our way to various family reunions, where we would laugh, play games and eat too much food.

Now for many of us as parents of children impacted by disabilities and special needs, Easter celebrations look a bit different. The idea of sitting in a cramped pew and the normal Sunday morning church routine having been thrown out the window sends chills up our back, as we all know change can be difficult.

Navigating family get togethers can give us a sense of dread and the idea of doing a community Easter Egg Hunt may be laughable.

So how do we make Easter a true celebration and communicate its significance to our little ones?

Here are 7 ideas that you can try at home.

1. Easter-themed scavenger hunt: Create an Easter-themed scavenger hunt with clues that relate to the story of Easter. For example, the first clue could be "Find the palm branch that people waved when Jesus entered Jerusalem" and the next clue could be hidden with a palm branch. If you want a little help with this, check out these resurrection easter eggs.

2. Easter Story Sensory Bin: Create a sensory bin or tray filled with materials that relate to the Easter story, such as miniature palm branches or palm leaves, rocks, and a small tomb. Your child can explore the materials with their hands and feel the different textures while you talk about the story of Easter.

3. Visual aids: Use picture books, illustrations, or even videos to help your child understand the Easter story. You could also create a visual schedule or social story to help your child understand what will happen during Easter celebrations. One possible picture book that your child might enjoy is:

   "The Tale of Three Trees" by Angela Elwell Hunt - This touching story follows three trees as they each become part of Jesus' life and ministry, teaching children about the power of faith and sacrifice.

4. Music and movement: Sing Easter songs or play music that relates to the story of Easter, such as "Jesus Loves Me" or "This Little Light of Mine." You could also use simple movements or gestures to help your child understand the story, such as pretending to wave palm branches or holding your arms outstretched like Jesus on the cross.

5. Role-play: Use props or costumes to act out the Easter story with your child. For example, use a toy donkey to represent Jesus' entry into Jerusalem, or use a blanket and pillow to create a tomb for Jesus. This can help your child understand the story in a more interactive and engaging way.

6. Resurrection garden: Create a miniature garden with your child to represent the Easter story. Use a small planter, soil, grass seed, and miniature figures to represent Jesus, the tomb, and the women who discovered the empty tomb.

7. Easter movie night: Watch an Easter-themed movie or cartoon with your child, such as "The Prince of Egypt" or "VeggieTales: An Easter Carol." Afterward, talk about the story and its meaning, and encourage your child to ask questions.

So which one of these do you think you will try? Let me know in the comments.

"But Jesus called the children to him and said, 'Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these,'" (Luke 18:16 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.

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You're Grounded!!!

Let’s talk parenting!

 Parenting is one of the greatest joys and greatest challenges all at the same time. Overwhelming joy and deepest grief. This month, we’re looking at something we do daily as a part of parenting…DISCIPLINE. 

We want so much for our kids. We love them with everything we are and have, and yet so often our relationships with them are characterized by frustration, tension, and conflict. When we correct them, what we really want to see is heart change, but most often after a discipline issue parent’s feel they’ve missed the mark or that their kid just hard-hearted and resistant.

But all is NOT lost – there is hope!

In the Hope Anew Online Community during the month of April the theme has been parenting. There are 4 short videos posted there on the subject:

Video 1 – I share some philosophies and approaches Jonathan and I have come to embrace in our parenting after some trial and error and weeding through MANY parenting books & approaches and even counseling courses. I share some reviews of and links to those in the next blog post.

 I also share some things we do NOT do or STOPPED doing (because they were counterproductive, but the most well-known Chrisitan parenting advice says that’s exactly how to parent). And, I share some things we DO do and have found to be beneficial that’s rarely taught.  

Videos 2 & 3 – We take the last part of video 1 (what TO do) to the next level as we look at the book Discipline That Connects with Your Child’s Heart by Jim & Lynne Jackson 

Video 4 – Is about the power of vision-casting and blessing in our kids’ lives.

If you are finding that parenting is an area that leaves you hopeless, exasperated, or isn’t going how you hoped it would (beyond your child having extra challenges), hop on over to the Online Community and take a look at the videos and see what your next step could be in disciplining and discipling your kiddos!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Not Alone

I have often felt lonely as a mom.  It’s a weird feeling when you are always surrounded by little people to also feel so alone, but I’m rarely really alone. Sometimes the depth of my loneliness as a parent feels suffocating. 

Who could possibly understand this feeling?  Truly, I am not alone.  In Isaiah 7:14 and Matthew 1:22-23 we are introduced to the idea of God being Immanuel, God with us.  This idea of God being with us is an idea I quickly took comfort in. Knowing I was seen by God in my struggles brings me deep comfort for my loneliness.  God is so many things, but having God with me is a place to take shelter. 

The depth of God’s desire to be with us is so strong that He has sacrificed his Son to bring us closer to him.  God is our shelter, protector, healer, comforter, loving father, He is wise, loving, faithful, unchanging, merciful, gracious, creative and he is all these things with us.   

There are so many times my children want me with them.  They want me to protect them and comfort them, show them affection, give them affirmation and remind them that they are loved.  Even though I am an adult I still long for those same things. 

God with me, Immanuel, is where I can find the love, affirmation, protection, healing and strength to be filled and continue to pour out to my children.  My oldest daughter struggled to learn how to ride her bike without the training wheels.  She worked tirelessly for 2 years to be able to ride successfully.  The entire time she was working on mastering this new skill she did not want me to let go of her. 

Having my hand on the back of her bike was a comfort she needed. My hand gave her the physical stability she needed, increased her confidence, and was a huge comfort to her.  Sometimes I want to have someone’s hand on my back as I walk through scary or new situations. I want to have God’s hand on me to increase my confidence as I interact with my child’s educational team at her school and ask for accommodations that will benefit her.  It can feel so lonely to navigate the series of waiting rooms and overwhelming to read the educational and behavioral reports on my daughter. In these challenging situations I am not alone.  I have God with me, offering similar comforts to the familiar hand that guides my daughter on her shaky bike.  

When the Israelites were wandering in the desert for 40 years, God guided them.  God led them as a pillar of fire and a cloud of smoke (Exodus 13:21).  Wandering. For 40 years. And God was with them as a visible presence.  Do you ever feel like you might be wandering in a desert?

I remember before we began our process of getting our daughter identified, I felt lost, wandering, disoriented.  I would move from one failed parenting attempt to another.  Reading blogs, books and anything that could help me feel like I had a handle on how to connect with my daughter.  I was not lost, nor was I wandering, I was being guided.  Do you know what the Israelites did as they wandered following this mystical cloud and fire?  They doubted, they complained and they felt that they were never going to make it out of it.  I have been there, complaining, doubting and feeling like I would never make it out.  Although my daughter’s challenges are quite mild, to see your child struggle in any way is painful.  Navigating this with God is a huge comfort. 

God deeply desires intimacy with us.  He wants to be with us in all situations.  God wants us to go to Him for our needs before we go elsewhere.  God wants to sit with me in the unknowns and the frustrations and also wants to celebrate with me when we have success.  We are his beloved children and he would rather we spend time with him then be busy, worried or distracted.  God with us, Immanuel, is an unending relationship with our creator. Immanuel is seeking us, waiting for us and guiding us into a deeper relationship with him.  This relational time brings joy, peace, comfort, strength and more.  We just have to be willing to be with Him. 

To grow closer to God we should go to God in prayer, walk with God, sit quietly and learn His loving, guiding corrective voice. Studying His word is how we grow closer to the God in us, the God with us, the God who sees us, the God who loves us and the God who deeply wants to be in an intimate relationship with us always.

Fear not, for I am with you; Be not dismayed for I am your God.  I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Stressed Out?

How is Covid impacting your family right now?

 The list of ways Covid is impacting our families could probably be as long as my arm and I have long arms.

 If I were to ask you how you are doing right now, many of you may reply with the words “stressed out.”

 On average, most people don’t like change…especially change that has been forced on us.  Many of us had to find new ways of doing life or are in the process of figuring things out. We are holding onto future plans loosely. This change, this uncertainty leaves us feeling stressed.

Did you know that taking 5 minutes a day to do something that refreshes you has been shown scientifically to help with your stress levels?

Today, I would like to challenge you to pull out your calendar and schedule 5 minutes a day to do something that refreshes you. Treat it like a doctor appointment that you wouldn’t miss or reschedule.

Here are four FREE ideas that can be done in 5 minutes:

1. Deep Breathing – This effective relaxation technique significantly reduces stress levels. There are many techniques to choose from and they are very effective.

2. Meditate – Specifically, meditate on God’s word and the character of God. God is constant. He is unchanging. Nothing that is going on is a surprise to Him and He is in control.

3. Refocus on Gratitude –Yes, there is a lot of hard but there is also a lot of good change that is happening. For example, many families are less busy and are spending more time together than they did before. Each day, come up with three positives that you can be thankful for that day.

4. Laugh – You have probably heard the saying, “Laughter is the best medicine.” Save funny comics or links to funny videos on your computer. Intentionally seek opportunities to laugh even if it is a little silly or is at risk of being met with an eye-roll. 

I don’t know about you but I can just feel the stress melt off of my shoulders when I have a good laugh.

So there you have it. Four things that you can do for free and that can be done in 5 minutes. The REST is up to you… no pun intended. Before you click that x to close this screen. Pull out your calendar and schedule 5 minutes a day each day next week and plan what you are going to try.  Don’t put it off. This is important for you and for your family.

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the 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.

 

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

When Our Lives Are In Upheaval

September makes me think of fall, even though it still feels like summer to start out. I love fall - pumpkins, cooler breezes, apple cider, campfires, hot chocolate,  s'mores, colorful leaves. Okay, I still have to wait a month or so for that one. But, I love fall in the north.

September also brings a settling into the routine of the school year. The newness is overcome and we start to "hit our stride". This year that settledness probably isn't as settled or as comfortable with the changes brought by COVID-19 or maybe the new teacher, school, routine, online or homeschooling is hitting some snags and isn't going well. 

I think we can all agree that this year has been a doozie. September marks the 7th month of our country and lives collectively being changed by the measures taken for a virus and the future being unpredictable. Being families with special needs, we've been through that unpredictable process before, even though this is very different.

But that isn't a new state of being for us, is it? 

What do we do when our lives are in upheaval and we can't project how or when they will be better again? One of the best things I've learned to help my state of mind and emotions during times of overwhelm, unsureness (of course, that's a word!), upheaval, unpredictability, trial, etc are looking at, learning, and remembering the names of God. Many of His names are based on His characteristics - who He is. In the Bible, names were often given based on their meaning. God even changed people's names to reflect a change in their life and to match the meaning of their name to that change.

Psalm 9:10 says, "And those who know your name put their trust in you." Trust in God is something that can keep us sane, focused, and at peace during times of unrest. I don't know about you, but when I focus on me and my circumstances, I lose focus on God and my anxiousness and unrest increases.

Intentionally recalling the names of God refocuses me on Him.

If you would like a great book to learn more about the names of God, check out God's Names by Sally Michael. This is a devotional I did with my boys a few years back that continues to bless me.

Written by Sarah McGuire

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Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here! 

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

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Stages In The Parenting Journey Part 2

Last week, I began this series by sharing about this epic adventure our family is on. If you missed it, you can read it here. This journey our family is on share a lot of similarities to the journey in special needs and has four stages. This week, I will look at stage two.

Stage 2 – Shock & Research

We realized we had to move if I was ever going to have the chance to heal and recover my health.

Following that demarcating decision there was so much to do. I dove into research, as I’ve become accustomed to doing. What could be salvaged and what could not? What process it would take to save what we could? No one fully agrees. It’s hard to get a straight answer. In fact, there is no one size fits all answer to the situation. Not only is there no simple answer, there’s no straightforward answer.

After a fair bit of digging and lots of reading including books and webpages of specialists, we had to make a decision and move forward even though there was no sure answer. Based on the best information we were able to gather and based on the testing we had had done, we had to get rid of nearly all of our things. Anything that wasn’t solid and completely washable in a special solution that kills mold and breaks down mycotoxins had to go. No, surely not. This couldn’t be the answer. But it was. 

In the special needs journey, an ultrasound may show an anomaly, a medical complication may show up at or shortly after birth, a developmental issue or regression may be noticed or occur between 1-3 years old, there are different demarcating starts to the journey. But they are all followed by a lot of research and figuring out what is next. What can be done? What is the prognosis? What does the diagnosis mean? How to handle the interventions needed whether it is surgeries, medical treatments, therapies, or all of them. Who goes with the child? Who takes care of the other kids? Who works to earn the money? How do we juggle it all? Mom and dad’s learning curves are steep. There is so much to learn, so much that is yet unknown, so many decisions to make.

There often is no one right choice, yet a path forward must be chosen and pursued. You didn’t want to go this direction. You don’t like any of the choices. Is it possible this is all a horrible dream and you’ll awake soon?

To be continued…

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 Due to COVID-19, Hope Anew is waiving all membership fees for the community!

The Polar Vortex and Gratitude: An Unlikely Combination

The polar vortex and gratitude. I never thought of pairing the two until the great polar vortex of January 2019. Even though I have lived through plenty of what we used to call "cold snaps".

•           I was 9 in 1965, the year that held the record low temperature for January 30 until 2019.

•           I was 25 and 5 months pregnant in 1982 when the mercury dipped to -45° when we were living in northwest South Dakota.

•           I was 33 in 1989 when school was called off for 2 days before Christmas break, which meant my third grade students had their anti-climactic Christmas party when school resumed in January.

The difference between my response to previous cold snaps and the 2019 polar vortex go far beyond a name change. My response to the 1965 cold snap was delight when Mom said she would drive me to school. In 1982, my husband and I piled into our friends' car and traveled 90 miles to go out to eat, though the thermometer was -20° at its warmest.

In 1989 our son born with medical special needs was 7, and his baby sister was a few months old. By then I was haunted by what our son's early years had revealed. His multiple surgeries, frequent invasive procedures, and nearly constant infections and illnesses showed that bad things happen even when you follow the rules and choose wisely. Therefore, my wisest course of action was to control the situation tightly, to protect my children, and keep everyone inside until the cold snap ended, or we ran out of Kraft Macaroni and Cheese.

By 2019 our son was on his own and doing well. We had begun an intergenerational living arrangement with our daughter, her husband, and their children, ages 3 and 1. We had gone through hard times and good ones. We had seen God faithfully provide doctors and therapists for our son. We had seen Him provide for every hospital and medical bill. We had seen Him provide when we changed careers. We had seen Him provide the houses we needed and could afford. We had seen how much better His plans were than ours. 

So when the temperature plunged in January 2019, when condensation streamed down the windows, dripped from the ceilings, and pooled on the floors, when the dryer quit working and the service people weren't making house calls, when the editor of my latest book for special needs families sent revisions with a short deadline, I didn't respond with my pre-motherhood abandon or with my post-motherhood iron grip of control.

Instead, I responded to the polar vortex with gratitude born of more than six decades of experiencing God's faithfulness. This time, I sat back to watch the latest installment of God at work in our lives. He didn't disappoint.

•           My husband and I saw God expose the condensation issues during preparations for an upcoming house remodel. Now we could talk to the contractor about what to do.

•           When the repairman said the dryer was toast, we were able to purchase one, used for 3 days and returned because the previous owner didn't like the color, for 1/3 the original price, and with the original warranty.

•           I asked friends to pray for me, specifically for wisdom and peace, while working on the requested revisions. The cold weather kept me home and focused, and the revisions went faster and more smoothly than expected.

 For me, the polar vortex and gratitude are closely linked, as is my gratitude for the privilege of raising a child with special needs. You may find that statement ludicrous if you are new to the role of parenting a child with special needs.

Thirty-six years into the job, I have come to trust God's plan for my life and the lives of our children. I have learned that the best gifts are not always easy, but they are always good. This is a promise I can trust and so can you.

This is a hope upon which we can stand together. It's a truth to remember when the next cold snap rolls in and God shows you how the unlikely combination of polar vortex and gratitude, as well as special needs parenting and gratitude, really do belong in the same sentence.

Written by Jolene Philo

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. The book she is co-authoring with Dr. Gary Chapman, Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, will be released in August of 2019. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

"No, I'm good."

Do you ever feel like you are just running from one thing to the next? Running from one meeting to the next, from one sports practice to the next. Running from counseling appointments to therapy sessions to school IEP meetings and the list goes on and on.

This week I was preparing to go to a meeting and was talking to our youngest son. As we were talking, I jokingly asked him if he would like to go to the meeting instead of me. He quickly replied, “No, I’m good,” laughed and walked away without any remorse and as happy as can be. Obviously, I didn’t really want him to take my place in the meeting but I can’t help but think there is so much I can learn from his response.

It can be hard to say “No.” I often have opportunities come across my plate. Some that I need to be at but others that I don’t really need to be at. I often have a twinge of guilt when I turn down an opportunity, especially if it is an opportunity that will help someone else.

In the last year I heard someone say, “Every time you say ‘yes’ to one thing, you are choosing to say ‘no’ to something else.” This really helped me to put things in perspective. It is easy for me to live life and commit to opportunities like I have an endless amount of time and energy.

When I live this way, I find myself completely exhausted, having a minimal amount of quality time with my family and generally not having the bandwidth to focus on the areas that are most important to me.

There will always be things that I have to do. The therapy appointments and things like that that generally have to be done but for everything else, I have begun running it through a filter. I look at how it will impact Sarah’s and my goals for our family and I look at how it will impact our goals with Hope Anew. If it doesn’t align with these goals, then it doesn’t get added to my list. I’m still working on not feeling guilty when I say “No” but it is amazing how much more present I can be for the things that do make it through the filter process!

We talk a lot about “self-care” on this site. Sometimes self-care doesn’t mean doing something to take care of ourselves. Sometimes it means not doing something.

Are you the parent of a child impacted by special needs? What is on your list that can be taken off? What filters can you put in place to determine if an opportunity is something you should or want to be a part of? There will always be opportunities and things to do but there is only one you.

Next time you are presented with an opportunity that doesn’t make it through your filters, feel free to follow the example of my youngest son and say, “No, I’m good.” Walk away without feeling guilty and know that you are doing the right thing for your health and your family.

WHEN THE PAIN IS TOO GREAT

On June 20, 2017 the Grand Rapids News published an article with a title reading, “‘Saw his son suffer too much, too long,’ friend says of principle in murder-suicide.” This article shared a friends perspective of George Heckman, an elementary school principle, who took his son’s life and his own life.

George’s 28 year old son Grant had cerebral palsy, was non-verbal and confined to a wheel chair. If you were a friend of George’s, you would think that he had it together. George was described as being able to make others laugh. He would volunteer and help other families, and he served on the board of an organization that came alongside those who are disabled. If there was poster of a parent who appeared to be doing well and to be thriving, George’s picture would have been on it.

Unfortunately, George’s story is not unique and has been repeated with other parents of children impacted by special needs around the country. In Michigan alone, over the last five years there have been at least 3 attempted murder-suicides of parents and their child who has additional needs.

There may be some days that you feel like George. You may feel like when others see you, they see a person who has it all together. While inside, you are just struggling to make it and it is killing you to see all the extra pain and hardship your child has to endure.

As parents of children with special needs, it is not uncommon to deal with chronic grief. Many have mastered the art of wearing a mask, because we think, “Nobody wants to hear about our pain again. The same struggles, the same pain we’ve been dealing with for the last five, ten, twenty years.”

The pain, hurt and anger can only be buried so long. In time they will reappear in one way or another. It may not be as extreme as George Heckman’s case but it will reappear, unless you address it.

Addressing the pain, doesn’t mean the pain will go away. It might but not necessarily and this doesn’t make you a weaker person. You will have good days and you will have days you really struggle. On those days you struggle, have one or two people that you can really be open and vulnerable with. Have those people you can take your mask off with without fear of how they will respond. It is amazing how much healing can take place when you can be real about your pain.

Do you have that person you can be real with? That person who isn’t scared when the mask comes off but respects and loves you more because of it?

If you read this article and find yourself feeling suicidal or homicidal, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or text with someone at the Crisis Text Line by texting HOME to 741741.

My Child Seems Developmentally Delayed, What Do I Do? Part 1

What do I do? How accurate is this? What does this mean? What can we do to help?

As I talk to parents, especially moms, who have just been given a diagnosis or who know something is not quite normal with their child and are in the process of testing or diagnosis, these are the questions they come to me with most often. Their minds and hearts are in a jumble, so many questions, fears, and unknowns.

I remember being in that place and the confusion and consternation that swirled in my mind and soul. There are no simple answers. However, over the last decade, I’ve gotten to travel further along that journey and fight many a battle both within myself and to get the help my child has needed. While not all of those questions are answered even now, I’m much more settled – emotionally, intellectually, and spiritually.

No two children or situations are the same, so there’s never one right answer or process to follow. I have five principles of how to navigate this. Today, I’ll share the first two of the five principles that I’ve found to be true and helpful at this stage of getting help for our children.

1.     GET HELP! Do seek out help for your child. Don’t let fear, excuses, or denial (He just likes playing by himself. She just doesn’t show much emotion; that’s just who she is) delay you very long. Sometimes the sooner help is found, the more difference it makes in the long-term outcome for the child.

2.     GET ANOTHER OPINION. My son’s first pediatrician’s office told me he had Separation Anxiety. Umm…he was three weeks old and NOT separate from me. When one doctor, therapy or test doesn’t feel right to you or doesn’t help, try another one. I’m a firm believer that if Plan A doesn’t fit or work, there is a Plan B, C, D, E,…keep searching.

If you are a Mom or Dad in this situation, you may feel like you are carrying the weight of the world as you are dealing with so many unknowns and don’t know what to do. Next week, we will look at the remaining three principles that have been helpful for me personally, as well as for other parents I’ve talked with.

If you are a parent who has already walked this road, what was most helpful for you during this time?

*List highly adapted from Different by Sally & Nathan Clarkson

About the author: Sarah is the Co-Founder of Hope Anew and has a background in counseling but the title she treasures the most is Mom of two boys. The youngest of whom has his own additional struggles.

5 Things Parents Of Children With Special Needs Want You To Know

Have you ever wondered what it would be like to sit down with the parent of a child with special needs and ask them what it is like? More than likely you would be greeted with a glazed stare, both from exhaustion and from determining if you are safe person to share with. 

They say that the best way to get to know a person is to walk a mile in their shoes.  This really hits home with special needs.  Many parents of children with additional needs have been hurt by well-meaning people who have never been in their shoes and it is difficult for them to really share where they are at with you.  However, if they open up, and I mean really open up, their answers will likely have the following five themes.

• It is really, really (can I add another really) lonely. When plans change, it is not because we are trying to avoid you.  We do value you and want to be with you but our kids are our priority.  We’re sorry we can’t make it to coffee, the guys night out, to the women’s retreat, to the ladies night, or to the family reunion.  Thank you for asking and please keep inviting us. That shows us that you still care.
• It is so hard and exhausting and will be hard for you to have a friendship with us.  We are a package deal with our kids.  It means that we are always in survival mode and never able to relax because something is bound to come up.  It is having to be hyper-vigilant, a strong advocate and on the ready.
• We are just like you. We are ordinary parents. We are not “Super Mom” or “Super Dad.” Please don’t try to encourage us by telling us that “God knew that you could handle a special needs child.” Some days we aren’t handling it very well at all.
• We often feel judged as parents.  We have to be creative and think out of the box.  We know you mean well but please don’t offer advice on how to parent.  As parents of children with additional needs, we have to do things differently.  Please respect our choices. Thank you for being understanding, having extra patience, and compassion.
• It is hard but it is amazing and I am a better person because of my child.  I love them and can’t imagine life without them.

Next time you are in a grocery store and see that mom sitting on the floor, while her child is melting down, let her know she is doing a good job.  When you see that friend with the autistic son, let them know you miss seeing them. Love them and when you are able, be there for them. 

We want to hear from you!  If you are the parent of a child with additional needs, what do you wish your friends and family knew?

NEW YEAR'S RESOLUTIONS WITH A TWIST

The new year has come and with it comes conversations about New Year’s resolutions. There are some very intentional folks out there who set aside time to think over the previous year and set goals for the upcoming year. There are other individuals that are more whimsical and just wing it, putting together a list of things on the spot when someone asks them what their New Year’s resolutions are. Typically, resolutions focus on health, finances, and relationships and often are very lofty goals that almost no one accomplishes. In fact, one source states that only 8% of people accomplish their list of resolutions!

It is easy to be fatalistic about new year resolutions given the low level of success. I admit that I am often the first to scoff at the idea of making a New Year’s resolution but I don’t want to minimize the need to set goals. As parents of children impacted by special needs, our resolutions may need to be more down to earth and have a different focus but in some ways it can be even more important for us.

So without further ado, I want to give you some ideas for New Year’s resolutions with a twist.

• This year, on those days I am seriously stressed, I am going to eat the WHOLE bar of dark chocolate with my coffee!
• Once a month, I will soak in a hot bubble bath with my earphones on so I can’t hear my screaming child (please note that said screaming child is safe and no harm will come to him).
• Instead of joining a men’s basketball team, I will set up the trashcan across the room and perfect that jump shot with my child’s diapers.
• If married, I will regularly take an evening out by myself while my spouse stays home with the kids, and I’ll encourage my spouse to do so as well.
• Each week, I will look for something to laugh about. This may come from my own life or it may require googling a funny video or comic.
• I will put together my own special music playlist on my smartphone or iPod that I can jam to when I need a break.
• I will stay off social media during times of high societal stress (elections, etc.) and will not follow those people on social media who drain my energy.
• This year I will download a fun audiobook…and actually listen to it.
• I will watch a movie of my choosing and not my child’s.
• I will get a massage at least once this year.
• I will try something new that I have always wanted to do but never have.

You may have noticed a theme with the above resolutions. Not to say that you won’t want to have other resolutions but this year, I want you to give yourself permission to look after you and do some things you enjoy without feeling guilty. Our tendency is to always focus on our children and their needs but if we don’t take care of ourselves, we won’t be there for the long haul with our children.

Let’s be real, with everything on our plates as parents of children impacted by special needs, the odds are not real high that we will achieve our new year resolutions. However, the first step in accomplishing something great or small is to set a goal. Michael Hyatt shared in a recent training that he provided that when we write down our goals, we are 42% more likely to achieve them. Look at the list above, what are two or three things you can set as your goal for caring for yourself this year or are there other things you can do? Now, write them down and put them somewhere you will see them.

WE WANT TO HEAR FROM YOU. WHAT WOULD YOUR LIST LOOK LIKE?

Kissing Under the Mistletoe

A family friend posted on Facebook, asking people who were married to share one word that described their marriage.  There were many cute and fun responses such as joy, blessed, friends, grace-filled, awesome, wonderful, committed, content, hilarious, complete, amazing, fulfilling, sexy, golden, rewarding, rich, funny, unconditional, and inspiring. What does my dear sweet wife enter? Fortifying… It just sort of sit’s there a little heavier than the other responses, doesn’t it? Leaving you wondering if that’s a good thing but afraid to ask, “What do you mean?” The sad reality is, that this was a toned-down response.  Her original reply was “foxhole.”

In caring for our youngest son, we often felt on guard.  Always evaluating situations and determining what we would need to do to make sure something didn’t accidentally happen to make his health go backwards.  Having to go the extra mile with doctors and their assistants to help them understand what did or did not work.  Making sure any workers in the church nurseries knew about his situation and didn’t give him something he wasn’t supposed to have and the list goes on and on. 

When life is full of high levels of stress and you are always having to work towards a common goal, it can have two effects.  If one spouse begins to begrudge the effort it takes, they may start to feel like “this isn’t what I signed up for.” This can cause a rift and lead to separation.  The other possible effect is that it can cause both spouses to really buckle down and while feeling like they are in a foxhole, it can be fortifying.  A marriage strengthened by trials and hardships.

While the difficult times may be fortifying, how I respond to the stress isn’t always.  It’s easy to let the hard take control and just focus on what to do next, neglecting what is easy to take for granted and putting my marriage on auto-pilot.  Marriages can’t be done in auto-pilot. We have to be intentional.

This doesn’t necessarily mean roses every day and a date night every week.  Although this may be nice, I realize that time and money are often in short supply.  As we look at a new year, I do encourage you to sit down with your spouse and find out what really speaks love to them. This year, as we decorated for Christmas, we hung a small branch of mistletoe and I must admit that I am tempted to leave it up year around. I also wish we had hung it up in a spot where we both pass through more often.

As you sit down with your spouse, here are two questions you can ask:

• What are some things that really make you feel loved?  Is it time together?  Being touched in a certain way?  Having help with a job or task you typically do or is it words of affirmation?  Don’t be vague and just say, “time together” or “physical touch,” assuming your spouse will figure it out.  Be specific, for example, “I like it when you sneak up behind me and kiss me on the neck.”
• “Is there anything I do that makes you feel unloved.” After you ask this, listen and take it to heart. Don’t get defensive. This question is more difficult and requires a level of bravery from both of you.

Sometimes it can be as simple as a hug that is a little longer than normal, a short love note hidden in their pants pocket for later, a conversation about their day, or a nice long kiss under the mistletoe.  Something to just let them know you love them, you understand and will be there with them at the end of the day.

We want to hear from you.  What is one thing you can do this week to show love to your spouse?

"CAN YOU HEAR ME NOW?"

“Can you hear me now?” In one simple phrase, Verizon highlighted and brought humor to a common frustration that befell many cell phone users.  We’ve all been there…talking away and eventually finding the line to be dead when we pause.  This leaves us wondering how long we have been talking to ourselves and at what point to resume the conversation when we finally reconnect. Or perhaps you have been in the position of trying to obtain some urgent piece of information like directions and the line is so garbled you can’t understand where to go next.  In one simple phrase, Verizon brought light to our desire to communicate and to be heard.

We all have a desire to be heard and this is an extremely meaningful way to come alongside families who have been impacted by special needs. 

In the three years that things were at their worst with our family, we only had one couple brave enough to invite us to sit down with them and share our journey and boy did we share our story.  We sat there over coffee, they listened, cried with us and didn’t offer a solution or other quick fix.  Now to be fair, we are fairly quiet and many people didn’t realize how bad it was.  However, that night was so refreshing and in so many ways it was healing just to be heard.  Did anything change in our situation?  No. But, we felt cared for, our pain was validated and we felt loved.

Listening is like any skill.  It takes practice.  Here are some tips to improve your listening skills to help those you are coming alongside feel heard.

·      Set aside time.  If you know someone is struggling, don’t give them five minutes in passing to share their heart. It will likely take a while for them to really be real with you.

·      Make eye contact.  Set down the cell phone.  Don’t take calls, check Facebook, reply to texts and don’t frequently check the time.

·      Be present…  Focus on what they are saying and not how you are going to respond.  Periodically repeat back to them in your words what you heard them say.

·      Acknowledge how they felt.  “Wow, that must have been…”  Don’t minimize the situation, over spiritualize, or offer some cliché response.  For example, “God doesn’t give us more than we can handle” is NOT helpful (or Biblical).

·      Love them.  When you leave your time together, they should feel loved and not judged.  They may be believing things that are not true.  As you develop your relationship with them, there may be a time to address that with them but that time is usually not when they are first sharing their story with you.

·      Finally, don’t avoid them afterwards or leave them wondering if they overshared.

So, “Can you hear me now?” 

What of the above tips can you implement to strengthen your listening skills?  Is there a family impacted by special needs that would be encouraged by having you intentionally sit down with them to hear their story?

“I called on the Lord in my distress, and I cried to my God for help.  From His temple He heard my voice, and my cry to Him reached His ears.” ~ Psalms 18:6 (HCSB)

JESUS WITH SKIN ON

Have you ever felt so emotionally and physically exhausted, that it was all you could do to just keep going?  Ten years ago, we moved to Fort Worth, TX in pursuit of a calling that God had laid on our hearts.  We were going to help bring his word, the Bible, to millions of people who had never seen it or heard it in their own language.  At the same time, our youngest son was born…allergic to all food, flat affect, unresponsive to the stimulus around him.  Sarah was only getting 2-3 hours of sleep per day if you put all the 15 minute increments together.   It felt like God had given us a great “calling” but then abandoned us.  One day, Sarah was asked by an individual how they could help…her reply, “She needed Jesus with skin on.”  Someone who could just come alongside our family, be there for us with simple daily tasks, clean the house, do laundry, make dinner, hold our screaming son, and let her actually get a break or sleep for more than a 15 minute stretch.  You don’t have to be in ministry for this to be your experience with special needs.  Many parents, whose children are impacted by special needs feel exhausted, alone, and even abandoned by God.  Without knowing it, they long for “Jesus with skin on.”

It can be difficult to know how to come alongside someone who is struggling, especially when you know there isn’t an immediate way to bring long term relief.  The chances are, that if you are reading this article, you personally know someone whose family has been impacted by special needs.  Here are some ways that you can be “Jesus with skin on” to that family:

• Pray for them (Let them know you are praying and ask specific things you can pray for that week or month).
• Ask how they are doing, and really listen. (You will likely hear the same struggles over and over…don’t judge.)
• Find tangible ways to serve them. (Babysit, get groceries, plant flowers and maintain the flower bed… Find ways that would be a blessing to them.)
• Send an encouraging note.
• Invite them to share their journey in special needs with you.  Allow them to share their fears and anger without judgment.  Avoid the desire to try to offer a “quick fix” or solution.
• Allow them to express and explore spiritual struggles they are having… Warning, this may stretch your own spiritual comfort zone.
• Avoid minimizing their situation.
• Instill hope without offering false promises.
• Be there for the long haul.  It will be a difficult friendship and will likely take more work to make it happen on your part.  Often you will be unable to relate to the depth of their struggles and if you aren’t intentional, it could be easy to drift away.

Who do you know, whose family has been impacted by special needs?  What can you do to be “Jesus with skin on” to that family?  If you are the parent of child impacted by special needs, what are some ways people have come alongside you that have been helpful or encouraging?

“By this everyone will know that you are my disciples, if you love one another.”

~ John 13:35 (NIV)

HOW ARE YOU....REALLY?

“How are you?”  Such seemingly simple words that are often used in passing. Acceptable social responses range from fine, good, or great.  Sometimes if someone wants to be slightly more real they will say “tired” followed by a quick laugh.  Have you ever met someone that you felt you could be real enough with to give an answer beyond the standard “good”? 

This happened one Sunday morning to my wife, Sarah.  We were in the church service of all places and during the meet and greet time, the pastor asked her how she was doing.  Little did he know how loaded the question was.  As she replied, and he inquired more, she could no longer hold down the emotion that she was feeling and she started crying (not normal for her).  She cried all the way through the service and all the way home, where she slept for the next two and half days.  She was spent…there was no more strength to keep going.

As parents, whose children are impacted by special needs, our natural tendency is to focus on the needs of our child over our own.  We neglect our health (physical, emotional and spiritual), our marriages and other relationships because we are so driven to care for our child(ren). 

When flying, before you take off the flight attendant always walks through what to do in case of an emergency.  Through that process, they explain the importance of first placing the oxygen masks over your own mouth and nose before taking care of your children.  The airline has realized that if we don’t take care of ourselves, then we won’t be able take care of our children’s needs very long.  They have also realized that our natural tendency, as parents, is to take care of our children first.

Christ set an example for us in how he cared for himself. When we look back at his time on earth, we can see him taking time to get away to pray, setting boundaries, seeking companionship from those who were close to him during difficult times and resting.

Below is a list of ways that you can take care of yourself.  Pick two or three that you can realistically do, even if for just 5 minutes.  You aren’t being selfish.  You are doing what you need to take care of yourself and your family.

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• Relax and rest

• Eat nutritiously (Avoid sugar)

• Exercise/Go for a walk

• Get enough sleep

• Talk about what happened (to God and others)

• Write about what happened (journaling, letters, e-mails)

• Laugh when you can

• Set small goals

• Keep some sort of routine

• Spend time with those who are supportive   and helpful

• Cry if you can

• Pray

• Reflect on the Word

• Sing or listen to music

• Know that the intensity of the pain will not continue forever

• Anticipate difficult times to come

• Ask for help and let others help you

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What two or three of the above things can you do or are there other things you can do?  How you implement them in your life may look different day to day depending on your situation but put that oxygen mask on. 

So...How are you really?  We want to hear from you! Please comment below what you plan to do or if there is something you are already doing that helps renew you.  Let us know what is working for you.