WHAT IS YOUR BREAKING POINT?

It was the middle of the night and it was pitch black out. The heat was oppressive and all I could hear was the whir of the ceiling fan. I woke up and could barely suck in a shallow breath of air. My chest was constricted and I was having sharp chest pains. A sense of panic came over me. After time, my breathing returned to normal, the chest pain went away and the panicked feeling dissipated. This was my first panic attack of what would be many more to come.

This panic attack didn’t come out of the blue but it was a complete surprise. Without realizing it, I had been experiencing chronic stress. Chronic stress can be defined as the response to emotional pressure suffered over a period of time during which an individual perceives he or she has no control. I was a prime candidate for this.

Our youngest son with additional needs was now seven years old and these needs had placed a tremendous stress on our family. As a husband and dad, I internalized my struggles and what I was feeling because I didn’t want to place more weight on Sarah. On top of our son’s additional needs, during the previous year I had 5 surgeries and was on bedrest off and on for 10 months. The final straw was working with refugees in a refugee camp in South Sudan. My body had reached a point where something had to give. It could not just keep pushing forward. On my way home, lying under a mosquito net on a cot in Juba, South Sudan I experienced my first panic attack.

I have since gone on to get the help I needed. I have prioritized making sure I am getting the right nutrition and am taking breaks periodically. These things have allowed my body to recover to the point that I no longer experience panic attacks.

Often, we, as parents of children with additional needs, just keep pushing on. We just take one more step and focus on getting through that next minute. This becomes our new normal and before we know it, years have gone by…step by step and without a break.

Our bodies can only live under constant stress for so long. After time, something will give. Some of you may find yourself in this state of brokenness right now. Maybe you are struggling with depression or doubts about God. Maybe you find yourself dealing with one of the many health issues that can result from chronic stress. I want to encourage you.  This does not mean that you are a weak person. It does not mean that you are somehow “less than”. It simply means you are human.

God sees your brokenness. He knows your pain. He gets it like no one else can. When it feels like you are alone, He is with you. He will use your brokenness.

“Give all your worries and cares to God, for He cares about you.”

~ 1 Peter 5:7 (NLT)

Please...Don't encourage me!

One of the things I typically love at conferences is talking with people and getting to hear their stories. I recently had the opportunity to speak at a conference. After the final workshop that Sarah and I lead, an individual came up to talk with me. It was a memorable conversation. He introduced himself and went on to tell me that mourning the loss of the dreams we had for our child when we have a child impacted by special needs is a lie from Satan. After I picked my jaw up off the floor, I mentally went through the workshop we had just lead on “5 Beliefs That Make Hard Times Harder & How To Practically Come Alongside Families Impacted By Special Needs” and had to wonder where we miscommunicated so badly that this individual felt this was the best way to come alongside me. After a brief conversation, he walked away saying that “he was just trying to encourage me.”

What I am about to say may sound harsh but it needs to be said. Please do not come alongside someone who is struggling, admonish them and then try to wrap a pretty bow on it by saying that you are “just trying to encourage them.” I don’t need that kind of encouragement and neither does any other parent I know who has a child who is impacted by special needs.

Parents of children impacted by special needs will go through seasons like other parents. Ecclesiastes 3:1,4 tells us there is a season for every activity under the sun. There is a time to cry, a time to laugh, a time to grieve and a time to dance. As parents of children with additional needs, we may bounce between these seasons more frequently or even be in one season longer than another.  And you know what, it’s okay. It’s okay to grieve. It’s okay acknowledge the loss. In fact, it is actually a good thing.  We are not saying that we love the child any less. We are not denying the value of the child or that God has a plan and is using this. There will come a time when we will heal (not to say we won’t still grieve at times) and we will be able to dream a new dream for our child. But if today isn’t that day, that’s okay.

Do you really want to encourage families whose children have additional needs? Leave any judgment or condemnation at the door! Don’t feel the pressure to be a teacher or educator on this particular season of life we are in. Most parents of children with additional needs already have enough self-condemnation and guilt that they are dealing with. Instead, be their friend and love them where they are at. Love them in the midst of their emotions without trying to clean it up. Be a part of that healing process.

Are you the parent of a child with additional needs? We want to hear from you! What has been the most loving way you have been blessed by a friend, family member or complete stranger when you were really struggling?

A God Who Gets It

Do you ever feel so alone and like there just is not anyone who really gets it? It is impossible to explain to someone in passing the realities of what it took for you to be at that place at that moment.  Most people won’t be able to understand what goes into your average week or would not know what to really say when you tell them where you are really at emotionally or spiritually.  When you finally are able to sit down with your friends over a cup of coffee, you find it hard to really enter into the conversation because you are in such different places. You find your priorities are different and discussing vacation plans or home decorating ideas is taxing.

Finding those one or two people who you can really be open with and really share your heart with is so hard. This Easter season I have been reminded that while being a parent of a child impacted with special needs can be really lonely, we have a God who gets it.  He gets it like no one else really can.

Many of us memorized John 3:16 as a child. It says, "For this is how God loved the world: He gave His one and only Son, so that everyone who believes in Him will not perish but have eternal life." It is so easy to just read over that and think how nice it is that God provided a way that our sins can be forgiven and that we can once again have a relationship with Him.  When reading this verse, I have always thought about the cost to Jesus for our salvation and it wasn't until recently that I really stopped and thought about what it cost God the Father.

He knew what restoring our relationship with Him would cost His only son. The Father knew what Jesus would endure when He came to a sin cursed world. He knew that as Isaiah, prophesied in chapter 53, His son would be a "man of sorrows, acquainted with deepest grief" and despised and rejected. Our Heavenly Father heard Jesus' prayer in the Garden of Gethsemane when Jesus was praying so intensely for another option that He sweated drops of blood. He knew that His son would die on a cross after being whipped, mocked and having a crown of thorns placed on His head. This is how I know that He understands what we are going through.  He gets my pain when I see the additional struggles my son faces. He gets my joy when I celebrate the successes.

So this Easter season, while I am celebrating the resurrection of my Savior, I am also celebrating the fact that I am not alone. My Father gets it and I can pour out my heart to Him at any time.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

~ Psalm 91:1 (NLT)

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?

Hope & Healing For Special Needs Parents

We were young parents, our second son had just been born and I was rocking in a recliner with him on my chest at two in the morning as he finally stopped screaming for a little while and slept. Oh what satisfaction, to finally have him sleep, even if for just a little while. This was allowing Sarah to get a brief rest after caring for him all day. 

This was our “intro” into special needs eleven years ago. This was our first clue that something was different. This is when our world changed.  Many doctor appointments later, the only help we received was, “We’ll make a note in his chart.” They would make a note that he couldn’t keep food down, that he was screaming in pain all day long, that he was projectile vomiting every time he ate and struggling with diarrhea and anal fissures. They would make a note that he was failing to thrive.

Our journey in special needs has taken us through many ups and downs. Every day having its challenges, it left us feeling alone and feeling like no one got it. There was a loss of faith in the medical system as it was unable to provide the answers or help we needed. It brought us to a point of questioning what we had been taught in church and Sunday school, wondering what promises from scripture we could hold on to. It brought us to a point of feeling broken, not being able to move forward, but having to. As a father, I mourned the loss of dreams that I had for my family and for my son. I struggled with how to best support my wife and family.

When did your world change? Does any of the following resonate with you? Is it all you can do to just keep pushing on, one more step, one more day, one more appointment? Do you feel like there is no one you can be real with and share the struggles you are having, so you bury them and keeping going forward? I’m guessing you keep caring for your family and making sure each person has what they need, except for you.

How long can you keep going like this?

Imagine a community who gets it. A community made up of parents who have been there. This community exists and we would like to invite you to be a part of it! Come join Hope Anew’s online Hope & Healing Group. We will kick off on March 22nd and will meet for 90 minutes on a weekly basis for 5 weeks. Sarah and I have the privilege of guiding you through this time, equipping you with tools you need for the journey ahead. Our background is in Biblical studies and counseling but most importantly we are the parents of two boys, the youngest of which has his own special needs. Each week, you will be able to see and interact with each other live as we discuss the topics of:

• Why God?
• What is Chronic Grief?
• Guilt & Forgiveness
• What is a Heart Wound?
• Healing Hearts

Come join a community who “gets it”, and be equipped in your journey towards Christ-centered hope and healing.  Click here to register.

A Little Help, Please!

Have you ever been in a place where you just can't keep going? You want to, you know you need to, others are depending on you, but you are just too tired. You've given and given and now you are completely exhausted. This is the situation we find Moses in in Exodus 17:8-16 (NLT).

The Amalekites have attacked. Joshua and the Israelite army are fighting a battle. Moses, as the leader for the Israelite people, has climbed to the top of a nearby hill with his brother Aaron and a man named Hur. As long as Moses holds "the staff of God" up in the air in his hand, the Israelite army would be winning the battle, when it dropped, the Amalekites would gain the advantage. "Moses' arms soon became so tired he could no longer hold them up. So Aaron and Hur found a stone for him to sit on. Then they stood on each side of Moses, holding up his hands so his hands held steady until sunset. As a result, Joshua overwhelmed the army of Amalek in battle."

Moses knew the stakes, if he didn't continue to do his role of holding the staff, the Israelite army would lose the battle. Lives were at risk. If he faltered, people would die. You too have a critical role - mom, dad, caregiver, advocate, intermediary, decision-maker, shelter, security, guide, teacher, nurse. If you falter, your child's life or welfare may be at risk. The stakes are high. You know the pressures, I don't have to tell you about them.

Reflection Questions:

1. Do you have an Aaron and Hur in your life who help when you need it?
2. Do you share (gently) with others that you need help or try to do everything on your own?
3. Do you accept help from others when it is offered? Why or why not?
4. What type of help do you most need – practical tasks, prayer, a listening ear? Who can you approach to be your Aaron and Hur? (It may be different people for different types of tasks.)

Lord, the needs of my family are so great and beyond my ability meet. I'm tired, worn and can't do it all by myself. Please send an Aaron and Hur into my life to help hold me up and make it so I can continue on in this very important role you have given me parenting my dear child(ren).

God Sees You

"Abram replied, 'Look, she is your servant, so deal with her as you see fit.' Then Sarai treated Hagar so harshly that she finally ran away. The angel of the LORD found Hagar beside a spring of water in the wilderness, along the road to Shur...And the angel also said, 'You are now pregnant and will give birth to a son. You are to name him Ishmael (which means 'God hears'), for the LORD has heard your cry of distress." "Thereafter, Hagar used another name to refer to the LORD, who had spoken to her. She said, "You are the God who sees me." ~ Genesis 16:6-7, 11, 13 (NLT)

Do you ever feel overwhelmed by life, in a tight or impossible spot with no help in sight and then, on top of that, alone...overlooked, like no one understands, sees, or cares? That is exactly where Hagar found herself. She was a servant, kicked out by her mistress, alone in the wilderness, pregnant. Yet, it was in these circumstances that Hagar meets and sees God like she never has before. And she gives us insight into WHO God is and what He is like even to an average everyday woman and mom.

After God gives Hagar a glimpse into her future, she responds by saying, "You are the God who sees me." I don't think she was impressed by the fact that He saw a traveling woman there by the springs of water unaccompanied and likely distraught, as other travelers passing by might see her. No, she was impressed because He saw to her very heart and all that encompassed. This so impressed her that she gave God a name we haven't seen in Scripture before, "The God who sees me".

You can rest assured that God sees you, too. You may feel invisible and overlooked by others in this world, but God sees. He sees you when you are checking the monitors all throughout the night. He sees you when your child is having a meltdown, again. He sees you when you can't bear to think about the future and what it holds for your child. He sees you when this last option therapy or procedure didn't work. He sees you when you just want a shoulder to cry on and there isn't one. He sees you. He sees all of it and He is there for you. It's WHO He is. He hears your cry of distress and He sees you.

God gave Hagar the name for her son, Ishmael, meaning "God hears" because He heard Hagar's cry of distress. Is there anything burdening your heart today that you need to cry out to God and tell Him? Go ahead, He's listening. Truly listening to hear your heart, your hurts, your worries, your anger, your doubts, your fears.

God Who Sees, thank you for seeing me.

4 Steps To Better Communication

Parenting is hard work… As a parent of a child impacted by special needs, you will have to work even harder.  Advice that you hear experts giving other parents often doesn’t work with your family.  This makes one piece of expert advice even more critical…communicate.

If you are married, the need for you to communicate with each other is key.  It is easy to get discouraged, not know what to do, or not know what to say.  It is imperative that you work together to come up with a game plan so you know that you are both on the same team, not working against each other.

Our son has a hard time communicating with me, especially when he is struggling with a decision I have made. During these times, he will go and talk to his Mom about it. She listens (so he feels heard, understood and calms down) and then coaches him on how to come back and talk with me. Notice, she doesn’t just listen to his side and overrule what I told him. She and I have an understanding about what she is doing during this time and instead of me being offended, I can recognize it for what it is and see the value of what is happening – he is getting training in how to handle conflict and how to communicate in a more effective way.  However, if Sarah and I hadn’t talked about this, it could easily appear that he was just going behind my back in these conversations.  She had to intentionally take time to communicate with me how he was feeling and what she was doing with these conversations.

Communication is difficult.  There is never enough time and we are all so unique in how we process things that it is easy to interpret a word or glance incorrectly.  Here are four tips to improve how you and your spouse communicate:

1. Set an appointment – If there is something the two of you really need to discuss, don’t just dive in right before bed but let your spouse know you need to talk and find out when would be good for them.
2. Be present – Make eye contact, put away the cell phone, laptop and other distractions.  Don’t interrupt or jump in with solutions.
3. Reflect – Summarize back to your spouse what you think you are hearing them communicate.
4. Determine – Was this informational?  Did your spouse just need to vent or do you need to work together for a solution?

How are you and your spouse doing with communicating? We want to hear from you.  What helps you and your spouse stay on the same page?

Entering Other's Pain

Do you like to go on hikes? I have a trail that I like to hike at the nearby state park.  The trail is nice and rolling.  It takes me through a beautiful woods, by a couple of lakes that typically have geese and ducks on them and finally it ends at a gate that has a sign on it that reads, “No Trespassing.”  This is my indication that I have reached the edge of the park and not to go any further.  Typically, I lean against the gate and catch my breath before turning around and going back.

Often, we treat people that are struggling like they are wearing “No Trespassing” signs and we are afraid to enter into their pain with them.  Have you ever read the story of Elijah?  I love his story and what we can learn from it about how to relate to those who are struggling! 

Elijah was a prophet of the God of Israel.  In 1 Kings 18, he has this incredible experience where he challenges King Ahab and the 450 prophets of Baal to an epic contest against the Lord of Israel.  Through his obedience, the Lord of Israel completely showed His supremacy over Baal. As a result, Elijah had the 450 prophets of Baal killed.

King Ahab went back and told Jezebel, his wife, what happened and that her prophets of Baal were killed. Jezebel became angry and she sent a message to Elijah threatening to kill him.

Elijah fled to the wilderness for his life and eventually laid under a broom tree, asking God to just let him die. Instead of granting his request, God sent an angel who provided food and water and encouraged Elijah to get up to eat and drink between resting periods so he would be well rested for the journey ahead. 

What if instead of doing this, God came to him and tried to give him a pep talk saying something like, “What’s the matter? Where’s your faith? Did you see what I just did back there?  I lit that place up! Not to mention that huge storm I brought when there wasn’t a cloud in sight!  Now let’s get back at it, you’ve got a big trip ahead of you.”   

Do you see a difference in the responses? In an attempt to encourage those who are hurting, I have often heard people gloss over the pain, offer some cliché or just focus on the positive.  We are afraid to enter into each other’s pain with them and just be there.  It’s not fun.  It’s not glamorous. It takes time and it can be scary but there is no better way to love someone.

How do you enter into other people’s pain?  It’s not about the words but about being there with them and for them, serving them in ways that are meaningful to them. Do you know a family impacted by special needs who might benefit from just having someone be there with them?

1 Corinthians 14:1a – “Let love be your highest goal!”

GOD, WHERE ARE YOU?

Have you ever felt alone?  There is a peaceful type of feeling alone.  It is sort of like sitting on the bank of a mountain side stream just listening to it gently gurgle on by with the birds singing in the trees around you and you are quietly being refreshed.  That is not what I am talking about.  The type I am talking about is where you are sitting in the ocean with no land in sight.  You are in an old wooden row boat with no oars and a 40 foot high wave is about to sweep over you.  There is an utter hopelessness and despair.

Does that sound familiar? 

I was recently struck by the story of Gideon, one of the judges of Israel.  When we find Gideon in Judges 6, he was threshing grain in the bottom of a wine press.  This was not the typical way to thresh grain. It was more common to thresh it from the top of hill so the wind could blow away the chaff.  However, Gideon did not want to be spotted by the Midianites who had been persecuting Israel for seven years.  The Midianites had been so cruel that the Israelites had taken to hiding in the mountains, caves and other strongholds.

While Gideon was threshing the grain, an angel of the Lord sat down beside a tree where he was working and said, “Mighty hero, the Lord is with you!”  Let me be clear, at this point Gideon was not a might hero.  In his own words, he was the weakest in the whole tribe of Manasseh and the least of his entire family. Gideon replied to the angel, “Sir, if the Lord is with us? Why has all this happened to us? And where are all the miracles our ancestors told us about?  Didn’t they say, ‘The Lord brought us up out of Egypt’? But now the Lord has abandoned us and handed us over to the Midianites.” The angel of the Lord then told Gideon that he was to rescue Israel from the Midianites. God went on to use Gideon to free Israel from the persecution of the Midianites.

Does any of this resonate with you like it did me?  Have you ever wondered why all this is happening to your child?  Or maybe you have seen God bring healing to the children of other families and wonder why He hasn’t done a miracle for your family.  You hear other believers talk about a closeness with God, meanwhile you feel abandoned and betrayed by Him. Then you struggle with guilt related to that.  I want you to be encouraged.  Just as God saw Israel during these seven years of suffering, God knows your pain, hears you and has not abandoned you.

Maybe you feel ill equipped for this journey and are just trying to get from one moment to the next.  I want to leave you with the words the angel of the Lord gave Gideon, “Mighty hero, the Lord is with you!” You are indeed a hero to your child and to your family.  God is with you, even when it doesn’t feel like it, even when that ocean wave is crashing over you and there’s no help in sight, and He is using you in ways greater than you will ever know.

Do you want to learn more about Gideon and how God used him to free Israel from the persecution of the Midianites?  You can check it out for yourself in Judges 6. We would love to know what you think!

Change Part 2

The phone rang, it was the front desk person at our son’s therapist.  She was calling to let us know that his particular therapist was going to be gone on medical leave and that we would need to put him with a different therapist for those weeks.  My gut thought was, are you kidding me?  Do you know the weeping and gnashing of teeth that we experienced until he was matched with the right therapist?  How long is she going to be gone and can we just skip until she comes back?  Ah changes, just when you think something is going good, something has to change and throw a wrench in the system.

How many unexpected changes did you experience this week as you were caring for your child?  Did you have a change in therapist? A change in appointment times? A change in placement plans? Maybe it is an event that you have been preparing your child for for an extended period of time, only to have it fall through at the last moment.

It is nice when we can prepare our children for an upcoming change but many changes are unplanned. For many of our children, when they experience an unexpected change it is like they just had the carpet ripped out from under them. Their world is turned upside down. It leaves them spinning and us at a loss for how to guide them through it.   

Here are some practical steps you can take when you find yourself helping your child work through an unexpected change:

• When possible, allow extra time to adjust to the change. If you are able to, remove yourself to a calm, quiet environment to eliminate extra stressors. For example, if you are at a therapist office, do they have a private room you can go to as you help your child process the change?
• Depending on the type of change, distraction can help. Is there a favorite song, story or toy. Point out something about the new situation that they would typically like. It’s easy to get caught in a cycle of negative thinking and this can help with that.
• Try to redirect your child to a calming activity or encourage the use of coping skills such as deep breathing. For example, do they have a weighted blanket or special fidget that helps them handle stress?
• Reassure your child that you are there for them.
• Attempt to be a calm presence and talk in a soothing voice. Our children are not the only ones who become stressed by unexpected changes. We do as well and it is easy to let the stress impact how we relate to our children, feeding their stress further.
• Validate your child’s feelings. For example, “I know you really liked this therapist and are disappointed by…” Then redirect to other things on the schedule that they may look forward to.
• PRAY. Pray that God will give you wisdom, courage, peace and guide the situation.

Unexpected change can strike fear in our hearts and cause those Momma and Papa Bear instincts to come out. Take a breath. You’ve got this.

We would like to hear from you.  What helps your children cope with unexpected change? 

Just in case you missed Part 1, you can find it here.

CHANGE PART 1

Change… What thoughts and feelings go through your mind when you hear this word?  For some, there is a great excitement and anticipation.  For many of you there is a deep weight that comes over you and a gnawing in the pit of your stomach as anxiety comes over you when you think about all the implications of that one word. 

Many of you who now struggle with change, may have at one point been huge change advocates but the unique needs of our children may have rightly left you a bit paralyzed by the word change.

This came to the fore front for us when on vacation this winter. My wife usually cuts the boys’ and my hair but during the rush of the holidays, she didn’t have a chance to cut our hair before leaving.  She also separated her shoulder so we knew she wouldn’t be able to cut our hair when we got home.  This meant finding a barber in a new area.  I looked up reviews of local barbers and found someone who would be close and had good reviews. 

The morning came to go get haircuts.  I knew that my youngest son was very particular about how his hair was cut and would never let Sarah do anything different.  Somehow, it didn’t occur to me how difficult it would be for him to have someone else cut his hair.  When we shared the plan with him that morning, he was on the verge of tears.  We were able to eventually talk him through it and I was able to get the exact measurements that we cut his hair at home.  With those reassurances, we were off to get his hair cut.  Upon arriving, his older brother went first so he would know what to expect and have assurance that the person did a good job. He watched and when it was his turn, he got right in the chair without a problem.  Now, he barely said a peep when the woman talked with him, but he did it!

Change can be hard for our little ones and strike fear in the core of our hearts but some change can also be good and even necessary.  There was no way Sarah could cut our hair and she needs to take a break for her arm to heal.  This was a necessary solution to help take one of the many things off her plate that she is trying to balance.  While it was a challenge for our son, it was also good for him.  It was not so far outside his comfort zone that it would scar him if done correctly.  Instead, it stretched him and was an area of growth.

How can we prepare our children for change when we know it is coming? Here are several steps you can take to help take some of the anxiety out of it:

• Before talking with your child about the upcoming change, come up with a plan.  Try to anticipate what fears and concerns your child may have. Is there a physical item that might help them with the change such as a weighted blanket or noise canceling headphones?
• Explain the situation and why it is necessary
• Listen to their fears and concerns without minimizing them
• Outline the plan and address their fears and concerns
• Allow time to process and adjust to the change
• Move forward and encourage frequently along the way. 

Despite our fears, change can be a good thing and even necessary.  What are some things that you do to help equip your child for an upcoming change?

Many changes are unexpected and we don’t have the luxury to always prepare our children for them the way we want to.  Next time we will look at coping with those unexpected changes. You can find that article here.

Breathe

Christmas and New Years have come and gone.  All the gifts have been unwrapped, the parties are a memory and the last of the fruit cake has been eaten.  Your therapists have come back from vacations and school has resumed. Give me a high five, you made it! While there were many wonderful moments that I am sure you never want to forget.  I know it wasn’t without its challenges.

Now you can resume those precious routines until the next big thing.

But before you dive in, take a moment to just breathe.  I mean it.  Take a moment right now to close your eyes, let the tension melt out of your shoulders, relax your muscles and follow the following 4 steps. 

1.    Take a deep, slow breath from your belly, and silently count to 4 as you breathe in.

2.    Hold your breath, and silently count from 1 to 7.

3.    Breathe out completely as you silently count from 1 to 8. Try to get all the air out of your lungs by the time you count to 8.

4.    Repeat 3 to 7 times.

It is easy to always focus on what needs to happen next and always be in go mode.  The stress compounding the way we wish our bank accounts would, affecting our physical, emotional, and spiritual health.  Taking a toll on the relationships we have and leaving us depleted and unable to take one more step. 

So as you feel that stress mounting, and you are getting ready to dive into the next thing just take a moment and remember to breathe.

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?

Feeling Isolated in the Midst of Gatherings

The season of holiday get-togethers was upon us.  Church carry-ins, family potlucks, and work dinners began filling up the calendar. With it, our level of anxiety went up as we began thinking about what preparations we would need to make so we could be at each of these events.  Tension mounted as we checked what food was being planned at each activity.  Often, we would find that we would need to bring an entire meal for our son due to his dietary needs.  There was a scramble to figure out how we could make a holiday meal that in some way resembled what everyone else would be eating so he wouldn’t feel too left out. 

At the events, our minds would be on hyper-alert trying to ensure that someone didn’t accidentally give our son a food item that he would react to and reverse months of developmental progress.  We would constantly be monitoring Jordan for signs that he might be on the verge of overload or any indication that he might suddenly melt down.   Picture two soldiers transporting precious cargo to a new location. They are driving through areas that are often friendly, the locals are waving, giving thumbs up to them but they are still vigilant for an attack that might come seemingly out of nowhere.  Their eyes trained to spot things most people wouldn’t notice.  While we would engage with friends and family, our guard was constantly up.  We were amid people who loved us but we still felt alone.

As I think about these struggles, I can’t help but think back to the very first Christmas.  The angel Gabriel came to Mary and let her know that she would be giving birth to the son of God. During this time, Gabriel also told her about her relative Elizabeth who was experiencing her own birth related miracle. Just a few days after receiving the news, Mary traveled to be with Elizabeth.

Elizabeth and her husband Zechariah had been unable to have children and now were old. Zechariah was a priest.  He was in the temple sanctuary burning incense when the angel Gabriel met with him and told him that he and Elizabeth would have a son who was to play an important role in preparing the way for the coming of the Lord.  Zechariah questioned how this could happen since both he and his wife were so old.  As a result of his doubt, Gabriel told Zechariah that he would be unable to speak until their child was born.

Imagine the relief that both Mary and Elizabeth must have felt to have had someone that they could talk to.  Mary likely received many incredulous looks from family and friends as they found out she was pregnant and probably had many of her own fears and doubts.  What a relief to have someone that believed her and didn’t question her story that the baby she carried in her was the son of God.  Imagine what it would have been like for Elizabeth not being able to really talk to her husband about the baby growing in her and not having other women in the community who could relate to what she was experiencing.  How extremely valuable it was to be able to have someone there who got it.  They valued each other’s company so much that Mary stayed with Elizabeth for three months, until just before Elizabeth was due.

If you find yourself feeling on guard this Christmas season and just trying to get through it, take comfort in knowing that you have a heavenly Father who sees you and knows what you are going through.  You might not have angels singing in the sky above you, or shepherds coming to your door, which is probably a good thing…talk about sensory overload, but the same Father who sent a star to guide the wise men to their Savior knows your every need, your heart, your struggles and is with you when you feel alone.  He didn’t just provide a Savior and turn His back on you but He is with you every day.

I’m praying that this Christmas season, when it is so easy to lose sight of why we are celebrating and when our precious routines are thrown out the window, God will provide you with an “Elizabeth”.  That He will direct you to someone who gets it, that you can encourage each other and that this season truly is a season of celebration. You are not alone.

We would like to hear from you.  What is your biggest challenge during the Christmas season and what helps you the most during this time?

Rewrapping Christmas: Establishing New Traditions

What are some of your favorite memories from the holidays growing up? Did your family have traditions that you looked forward to every year? Maybe it was a special dessert, a fun activity, or a certain event.

Growing up, the smell of cookies baking would take the edge off those frigid days and signaled the coming of Christmas. Mom would go into baking mode the weeks before Christmas and would bake so many different varieties of Christmas cookies that were to be brought out on Christmas day. Each of us had our own favorites that we would sneak from the freezer. Mom must have made extra to accommodate for this, because we always seemed to have more than enough for Christmas. In addition to this, we would have a special coffee cake that she made for Christmas morning.

It may sound silly, but when we found out that our youngest son was allergic to all food except sweet potato, I really went through a grieving process during the holidays. It was such a huge part of what I looked forward to each year. Celebrating Christmas was synonymous with having scrumptious smells wafting around you like a warm blanket, inviting you into a sense of peace, comfort and safety. The most challenging decision being which cookie to eat next and leaving you with anticipation over the meals to come. I missed this. Christmas no longer felt like Christmas.

Each of us have those things that make the holidays feel special. Many of us have had to give up those things due to the needs of a child and that is okay, we would do it again in a heartbeat but giving up those traditions can leave us in a little bit of a funk. It is also okay to miss those things. Don’t feel guilty about it.

 So what can you do if you find yourself in a little bit of a holiday funk this year?

• Acknowledge it to yourself. Don’t pretend that everything is okay or put yourself down for struggling with the new normal.
• If married, share about it with your spouse. Odds are they are struggling to some degree as well. If not married, find a friend you can talk to over a peppermint latte or other favorite holiday beverage.
• Dare to dream. What new traditions can you build? Initially they may feel forced, but eventually you and your family will look forward to them with eager anticipation.

Our family now enjoys unwrapping a new pair of Christmas Pajamas and watching “Elf” on Christmas Eve. As I sit here with my cup of coffee, healing has taken place and I can fondly reflect on the memories from Christmas’ gone by and look forward with anticipation to the Christmas’ yet ahead. 

We would love to hear from you. What does your family do to make Christmas special?

"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.