Too Much of a Good Thing?

Do you remember pre Covid-19 when you dreamed of working from home or having your spouse work from home? Do you remember when you thought it would be so wonderful to have more time with your family or you thought it would just be so great to have your spouse home more to help support you with the parenting load. 

We’ve been living the “new normal” for a little while now. How would you say it is going? Has working from home been everything you dreamed it would be? Some of you might be thinking, “It was great to begin with but you know what they say about having too much of a good thing.” 

Working from home had been a dream of mine. I envisioned a time that I would be more available for Sarah and when I would have more time with my family. As I prayed about future goals for our family, this became a prayer of mine.  Sarah and I have had the privilege of both of us working from home for the last eight years. She homeschooled the boys, while I worked in my office. 

What started out as bliss became “too much of a good thing” at times. One common scenario looked like this. Sarah would finally get the boys focused and I would come out with a work related question or asking her to review an email. I didn’t see the big deal because in my mind it would only take five minutes to answer the question.  In her mind it was a huge deal because she had just spent the last half an hour getting them to focus and it would take her another hour to regain the boys’ focus.

In order for working at home to work and for the dream to not become a nightmare, we had to establish boundaries and set up a system for handling the different things that came up throughout the day that we needed each other’s input on.   

Some of you might be finding yourselves  having this same struggle.  You’re not used to having this much time together and your routines are not working like they used to. You might find yourself dwelling on those little, or maybe not so little, irritations that come up throughout the day.

Here are four tips to help this extra family time to not become too much of a good thing:

1.  Talk about it with your spouse. Don’t lash out about it but calmly communicate the point of tension. Sarah was able to share with me how my interruptions were impacting the school day with the kids and we were able to develop a plan. As a side note, if both you and your spouse are reading this, be prepared for your spouse to talk to you. Be safe and loving. Don’t become defensive. Take responsibility and work with your spouse to develop a plan.

2. When you focus on the negative, it is easy to only see the negative. Take captive those little annoyances about your spouse, remember that they are the same person you fell in love with however many years ago, and don’t think about those things.

3. Choose to think about the positives of your spouse and make a list.

4. Share one thing with your spouse that you appreciate about them.

It has been eight years since we began working at home together. We have each grown in so many ways. There are still days where we struggle but those are fewer and our marriage is stronger.

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!

Count Your Blessings: A Way To Stay Sane in a Crisis

Count your blessings, name them one by one,

Count your blessings, see what God has done!

When I was much younger, I rolled my eyes every time we sang this hymn at church. To my mind, the lyrics touted a solution far too simplistic for the troubles our family faced.

Even when I did as instructed, life didn’t get better.

 My dad was sick and getting sicker. My mom shouldered too much stress as she worked to feed and clothe us. The trend continued after the birth of our son. Five years and seven surgeries into his young life, life was hard and getting harder.

 So far as the count your blessings thing went, I told God to count me out.

 Then, one day the beginning of Zechariah 4:10 caught my eye: “For who has despised the day of small things?” (NASB)

Hmmmmm. 

If my response to the lyrics of Count Your Blessings was any indication, I had been despising the day of small things for years. Maybe even decades. 

Not good. Not good at all. 

An attitude change was long overdue, and it was a hard change to make. But as I began to look for small blessings, it was easier to see and delight in them. 

And then, along came COVID-19.

 The temptation was strong to stop searching for small and good things while living through such a vast pandemic. But for my own mental and spiritual health, I kept looking for and found these 10 tiny and precious treasures.

1. The ability to walk. My dad’s 38 years in a wheelchair make me grateful for mobility every day.

2. Favorite notebooks and mechanical pencils. I don’t know why speckled composition books, yellow legal pads, architectural mechanical pencils bring great joy, but they do.

3.  Ordering online. It’s fast. (At least the ordering part is fast.) It’s easy. And it’s much safer for old coots like me who want to stay healthy until the risk of catching COVID-19 go down. 

4. Our espresso machine. Several members of our household love good coffee, so we splurged on it last summer. The coronavirus shut down feels less confining with delicious espresso at hand.

5. It’s spring. More daylight and warmer temperatures bring me joy and hope.

6. Bird song. Another daily source of joy and hope.

7. Intergenerational living. We live in the same house with our daughter, son-in-law, and their two children. This intentional living arrangement began 4 years ago, and it takes work to keep things going smoothly. To us, it’s worth it. Doubly so during the shut down. Our daughter trimmed my hair a few weeks back. Our son-in-law does the grocery shopping. And water, sewer, garbage, and energy bills are split between families. Win! Win! Win!

8. Eavesdropping on a 5-year-old at play. This could have been lumped in with #7, but listening in on a child’s make believe world is so dear, it deserves its own spot.

9. Happy birthday to me. Our 2-year-old granddaughter sings this when she washes her hands. It’s too much cuteness to lump in with #7.

10.  FaceTime. We use it to connect with our other 2 grands and with my 91-year-old mom who’s in a residential care facility. Because of #7, all our grands can visit at the same time, and Mom gets to see her great-grands. More wins!

Caregiving or COVID-19 can make it hard to count your blessings, and I get that. But I encourage you to look for them, no matter how small. They have the power to keep you sane in a crisis.

Because little things matter.

Tiny things count.

Small things add up.

And you are worth it.

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Parents of kids with Special Needs – YOU ARE AMAZING!

I was walking up the driveway pondering some of the parents of kids with special needs we know and marveling at the common traits they have and how exceptional they are. I think parents of kids with special needs are some of the most wonderful, amazing people I have ever met.

Here are 5 reason why:

1. They have their priorities straight. So much of America’s population, even Christian, Bible-believing, church going population is about achievement, looking good, having fun, wearing the right brand of clothing, being cool and keeping up with the Jones’. If you can’t do that or don’t care to do that, you kind of disappear from being accepted and included.

   As a group, the special needs parents I have met have learned that relationships, loving other and being there for each other in hard times matter more than anything else next to clinging to God. Yes, they love a good night at the movies and wouldn’t turn down a trip to Dollywood. After-all, Dollywood has a sensory room for when junior hits meltdown, which can make the trip a possibility.

2. They have learned to face difficulties. Challenges have become a way of life. Parents of kids with special needs are the strongest, most determined, loving, ferocious (mama bear, anyone?) group of people I’ve ever met. Daily life is difficult to say the least. Some seasons require just living through the next minute or hour, forget planning for tomorrow, next week or next year. They are masters at flexibility and changing plans as navigating around obstacles has become second nature.

3. They see value and worth where others see inability and hardship. While looking in from the outside, others see children or people who can’t walk, can’t talk, look different, are challenging, need help, take resources. Parents of kids with special needs see the most treasured people in their life who give unconditional love, bring joy, work harder than anyone to succeed at the simplest of tasks, get delight from simple things that others easily overlook, and a myriad of other qualities. Just talk to a parent of and adult child with special needs and you’ll likely hear how their child with special needs has blessed them more than they ever anticipated.

4. They never give up. Yes, they get weary – very weary. They may want to quit – for a day in order to nap and rejuvenate. They may want things to be easier, but when it doesn’t get easier, they still don’t give up. This is their child, whom they love dearly. Spouses may walk out. Parents and in-laws may criticize and belittle. Friends may desert them. But, they never quit on their child. They do what is within their power and resources to help and love that child to the best of their abilities.

5. They turn hardship into blessing for others. It may take a few years because those early years they are just barely surviving, and they may go back to survival mode here and there as their kids get older and hit different challenges. But, once they get the hang of things, they start helping other parents of kids with special needs. I’ve met a mom who started an entire company of patented weighted blankets that started because of her daughter’s special needs, and my son has benefitted from her blankets. I’ve met a mom who started a nonprofit helping others learn how to rest and rejuvenate in the midst of great pressures, duties and stresses because of her own journey as a mom of multiple kids with special needs. I’ve met many parents of kids with special needs who write and speak to encourage and equip other parents and to church ministry leaders to help them be able to reach out and help more families. I could go on and on about the incredible things parents have done to help others.

That’s my husband’s and my story too. Both of our backgrounds are in counseling. We were missionaries and he was doing trauma healing work in a refugee camp in South Sudan when he saw the correlation between the trauma and questions the refugees were struggling with and the challenges he and I had experienced as parents of a child with special needs. When he got home to the States, he shared with me and as we talked to other parents the need was obvious. We couldn’t find an organization that was addressing it, so a few years later we started Hope Anew.

Moms and dads of exceptional kiddos, we applaud you and we think you are amazing. I know most days you struggle to make it from morning to night and some of you struggle to make it through the night too. I know you are barely hanging on sometimes. I know your heart wrenches as you watch your child struggle daily with the simplest of things. I know your heart weeps when you can’t provide something that will help your child. I know your heart leaps and sings when they conquer a task they’ve worked at for years. I know it’s a tough road. But I also know you have risen to the challenge and are making all the difference in the world for your child. Thanks for being an amazing parent.

You are our heroes!

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!

Overcoming Parental Burnout

Help! I’m on the road to parenting burnout and don’t know what to do!

 This is a hard place to be. When we struggle with burnout at work, we can look for another job if needed. When we find ourselves here as parents, it can feel hopeless at times. We can’t just say,  “I’m done being a mom or a dad”. Although my wife has tried that but after a couple hours she’s ready to jump back in.

As parents whose children have additional needs, the recommendations you are about to read will seem difficult and if you are a single parent, they will seem impossible.

So what do we do when we recognize we are showing signs of burnout?

1. Talk to someone and ask for help!

If you are married, let your spouse know where you are at emotionally and ask if they can help with a specific task.  “I am completely overwhelmed and could use extra help for a while. Can you watch the kids for a couple hours while I get groceries?” (You might want to allow extra time to drink a cup of coffee at the local coffee shop and bring one back for your helper. 😁)

If you are a single parent, this is really hard. Do you have a friend that you trust that you can both share where you are at and that you can ask for help from?

It is oddly hard for us to ask for help. There are a lot of reasons for this. We may be thinking that we don’t want to add extra burden on someone else or one of many other excuses.

Here are three things to keep in mind when asking for help:

• Be specific. It is hard for someone to agree to help when they don’t know what they are agreeing to.

• Be flexible. If a person is only available to help during a certain time, what can you reschedule to try to make that time work?

• Let go of perfection. Realize that things may not be done perfectly or the way you would do it. If it is not something that threatens the health of your child, then let it go.

2. Prioritize sleep.

You likely know this is a need already. Our bodies need sleep. This may mean taking a nap as a family. You may need to ask a spouse, friend, someone from church or a babysitter to watch the kids while you take a nap. This may mean that the stack of dishes doesn’t get washed or put away or that load of laundry doesn’t get folded.

3.     See a counselor.

Many churches have an agreement with local counselors and will pay for you to see the therapist. There was a period in our journey when Sarah went to see a therapist that our church provided. The main motivating factor for her was so she could have an hour break.

4.     Establish a routine and minimize multitasking. 

I’ve heard multiple parents express that they are experiencing decision fatigue. Routine will help with this. Establish a two week menu plan so you don’t have to think about what you are going to eat every day and so you can use the same grocery list each time. Determine which outfit you will wear each day of the week and stick with it so you don’t have to think about it every morning. One mom we know wears a t-shirt every Monday that says, “This is my Monday uniform.”

We often feel pressured to multitask. In some cases, I feel like this is especially true for women. The truth about multi-tasking is that it can decrease our productivity by up to 40% and we typically feel more stressed as a result. It is not completely unavoidable, but how can you set boundaries to minimize the amount of multitasking you do in a day. 

5.     Take a break.

It is important to take a break, even if it is only 5 minutes.  Let’s be real though. Sometimes we need a longer break.

Here are some ideas to help with that:

• Talk with your pastor and see if there is grand parent or nurse that would volunteer to  come watch the kids. You don’t even have to go anywhere. You could take a nap!

• Check with area churches and see if any of them provide a respite night for parents of children impacted by disabilities and special needs.

• If you don’t see a church that does this, check out 99 Balloons or Nathaniel’s Hope and see if they come alongside families in your area.

6.     Take care of your body.  

This is often the last thing that we want to do. It adds extra stress when we think about it and seems like more work.

What we put into our bodies can help or hinder our recovery from burnout. Nutrient dense foods provide us with the fuel we need to recover. Our eating habits do impact our overall health, energy levels and how we feel about ourselves.  I’m not saying that we need to always eat organic freshly prepared meals. Sometimes self-care means throwing that frozen pizza in the oven and having a bag of chips.

Related to this is being physically active. Aside from the physical benefits, being active can boost energy and increase those feel good hormones. This doesn’t have to be going to the gym for an hour each day. It can be  as simple as going on a walk with your dog, playing outside with your kids,  or taking time to stretch your body.

7.     Laugh.  

When we are stressed, it can be difficult to find things to smile about and laugh about. Laughter is refreshing and lightens the mood of the entire house. Save a folder on your computer with links to funny videos, jokes, etc. Take a 5 minute laugh break every day and this will help so much with your stress levels. Even fake or forced laughing has been shown to be beneficial. In fact, here is a funny video to help get you started.

Change and recovering our health happen incrementally. Don’t feel like you have to do everything on this list this week, but what is one thing you can do?

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!

Stages of Parent Burnout

So did you take a break last week and ask yourself if you recognize the signs of burnout in your life? Some of you just thought, “I didn’t need to pause to know I’m burnt out.” Others of you are thinking, “I’m good. In fact, I think I will make cupcakes for our therapists when I can get out of the house.”

Did you know that you don’t just wake up suddenly not wanting to be a parent or not wanting to get out of bed. Burnout happens gradually.

How many of the following points resonate with you?

• Having a child with physical or mental health challenges

• Perfectionism: feeling you need to be the “perfect” parent at all times

• Lack of support from spouse

• Both parents working outside the home

• Financial concerns

• Not enough support from outside the family (childcare, extended family, etc.)

• Finding it hard to ask for help

• Over-scheduled kids

Many of us can look at that list and can easily circle between a third to half of the points and even come up with additional points. As the stressors increase, we become more at risk for burnout. This burnout can range from mild to severe.

In her podcast episode on Parental Burnout, Krista Maltais describes the severity of burnout as follows.

Mild Burnout: Mild burnout can start with some situation that is outside your normal that causes extra stress. This can be something as basic as caring for a child or spouse that is temporarily sick. These symptoms may include, short temper and/or limited tolerance, foggy-brain, heightened sensitivity to their emotions and environment, and is usually accompanied by disruptions in sleep patterns.

Moderate Burnout: A parent who is experiencing moderate burnout, perhaps due to prolonged sleep deprivation or other stressors (such as finances, lack of childcare, limited opportunities for self care, etc) may begin to experience additional physical symptoms such as headaches, confusion, forgetfulness, upset stomach, anxiety/depression, feelings of isolation and/or overwhelm. As burnout sets in, communication with others also tends to break down which can lead to an increase in conflict, misunderstandings, etc, especially with the partner.

Severe Burnout: A parent with severe burn out due to long-term exhaustion, stress, lack of physical/emotional/logistical support, and/or physical/mental health complications, may exhibit the above-mentioned signs as well as hormonal imbalance which can further cause a loss of sex-drive, insomnia or dis-regulated sleep patterns, and additional health problems. Burnout symptoms may also present as obsessive compulsive tendencies or a multitude of uncompleted/avoided tasks due to overwhelm.

The first step in overcoming burnout and preventing burnout is the same. You have to recognize the stressors in your life. 

Next week we will look at steps to preventing and overcoming burnout. In the meantime, if you haven’t done it yet, download our free “5 Minute Vacations” guide and check out our friends at Run Hard Rest Well. That will get you started in the right direction.

If you find yourself in this severe state of burnout and are having suicidal thoughts, please seek immediate professional help. The number for the suicide hotline is: 1-800-273-8255.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” ~John 16:33 (NIV)

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!

Parenting Burnout

It is week number whatever since COVID-19 began and I am making good progress on my coffee stash.  The cutesy Facebook posts highlighting everyone’s Pinterest projects are starting to fade. The smiles are starting to look more strained  as parents are wondering how much longer they will have to be the counselors/craft room directors at “Camp Corona.”

When asked how they are doing, I have heard multiple parents sheepishly reply that they “need a break from their kids.”  

There is a feeling of always being “on” and no end in sight. Parents are helping their kids navigate emotions, trying to come up with activities, and teaching school. They may have less help and support to care for their children impacted by disability. They are helping their children work through interpersonal conflict with each other and trying to come up with out of the box ways for their children to have social interaction. This is all while trying to figure out the rest of life. You know the little things like jobs, bills, taxes, food, and toilet paper.

I’m going to make a comparison that you may find to be controversial and may make you uncomfortable but if we were looking at someone who had these types of stressors at their regular place of employment, we would say that they were at risk of “burnout.”

You may be thinking to yourself, “but parents aren’t allowed to burnout.”

 If you Google burnout, you will get the following definition:

“Burnout is a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress. It occurs when you feel overwhelmed, emotionally drained, and unable to meet constant demands.”

Does this sound familiar? In all reality, due to the nature of this journey in special needs and disabilities, you have likely found yourself in this position prior to COVID-19.

In those times where you find yourself fantasizing about a half day where you don’t have to be a parent, a spouse and a care giver, you likely have recoiled and buried the emotion. We feel guilty because we fear it means that we love our families less and are fearful of sharing this emotion with others because we are afraid of what they may think.

I want to encourage you. This feeling doesn’t mean that you love your family less but it is a feeling we should take seriously when we experience it. It serves as a warning.

I recently heard the analogy that batteries only have so much energy that they can expend before they are completely depleted. This is true of us as well.  We know that if we want to use our cell phones tomorrow, we can’t just use them non-stop and not charge them.  Similarly, we need to charge our own batteries. This is done through self-care.

So how are you doing? Do you recognize the signs of burnout in your life? If so, what is one thing you can do today to begin recharging your battery?

If you need ideas for self-care, feel free to download our pdf on “5 Minute Vacations” or watch the video here. We will also be talking about this more in upcoming posts.

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!

Why Am I Struggling So Much?

Do you ever wake up and not want to get up? Do you ever lose your motivation and drive? Stay awake at night too late just vegging or zoning out? Snap at your spouse and everyone around you? We go about our day to day lives, caring for our kids, spouses, and selves handling what needs to be handled, doing the tasks that need to be done, mediating the scuffles that arise, and a host of other things. You used to have motivation to do all the things, to tackle the challenges, to meet the needs, to love others well in a peaceful way. Now you feel sad, angry, grumpy, tense, or unmotivated.

So, what is going on? What has changed? Why are you struggling?

 As a parent of a child with special needs and disabilities, you aren’t alone. The more parents I talk with the more I see this as a common, almost universal struggle. It may not be all the time, and it can be more pronounced in certain seasons of life and circumstances. And, I’m seeing it strongly right now in the general population with the Coronavirus stay-at-home order. Why?

One of the main reasons is grief. Grief is not only experienced when there is death, but with any type of momentous loss. This includes the loss of what was expected or anticipated in the future but will now not happen. This might be the hopes and dreams you had for your child and for how your family would look, activities they would do together, social interaction with family friends. But, the child will never accomplish those things, the family can’t do those activities, and the friends deserted you when you had a child with special needs. It might be a vacation you had planned or a graduation ceremony and senior year events with friends that won’t take place. It could be a lost job or every bit of “extra” income going to pay for therapies and treatment instead of a night at the movies or a vacation.

Grief has five stages: denial, anger, bargaining, depression, and acceptance.

These stages aren’t linear, so just because you dealt with anger yesterday that doesn’t mean you’re done with it for good. No, you can go through the stages repeatedly and can bounce back and forth between different stages. You may stay in one stage for a while or you may experience all of them in one day. A participant in one of our group Hope & Healing Workshops once commented that they felt like they were in the tumble dry cycle of a clothes dryer and that can sum it up perfectly.

 What do you do about it?

1. Acknowledge it. Name it. Simply identifying it and naming it can help so much.

2. Express it. That will look differently for different people and personality types. It may be writing in a journal, talking with a friend, having a good cry, writing a lament, expressing it to God, etc.

3. Shelve it. While this isn’t a good long-term plan, it is sometimes necessary in the short-term. Sometimes in order to deal with what needs to be done right now in this moment, hour or day, we can’t take the time to deal with it because it would stop us from handling the current situation. But, still name it, “Oh, that’s grief. I’ll need to deal with and express this later for my emotional, mental, physical, and spiritual health, but I need to set it aside for now so that I can complete _____ task.”

4. Express it some more. Grief comes in waves and just because you acknowledged it and expressed it once doesn’t mean the process of grieving is complete. It will usually take repeated expressions of it before you are ready to move on, especially with more significant losses.

5. Don’t let yourself get stuck there. If you only ever focus on the loss, you won’t be able to move into the future and build new dreams. This doesn’t mean you deny the reality of what you lost, but it does mean you say something like, “Yes, I lost ____ and that is significant, hurts terribly, and I will continue to grieve it sometimes. Yet, I have ______ and while it will be different than what I wanted, expected, and hoped for, life can still be beautiful, good, and purposeful.”

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, all membership fees to the Hope Anew Online Community have been waived!

A Better Way

Here in Illinois we are in week 4 of the Coronavirus lockdown and our house is rapidly edging toward stir crazy. I am used to working from home. Pretty much no one else here is. My wife is a raging extravert and my daughter, a sophomore in high school, desperately wants to see her friends. Our oldest can’t go to work because it is shut down. Even my autistic son Nathan, who is in a transition program he doesn’t really like, wants to go back to school. Online school simply isn’t the same. His mom has been his paraprofessional and she is tough.

For most of us, the coronavirus pandemic is inconvenient, but for others, it really is causing suffering: people are dying from this disease, businesses are failing because they cannot operate. There is going to be fallout for some time to come. Just like our series looking at the causes of suffering related to our special needs children, many of us are asking why this pandemic is happening. Is it our fault? Is it God’s fault or the devil’s fault? Is there no fault at all? What are we to do about this?

As we have seen, these questions often lead to answers that come up short. The Bible simply doesn’t offer us a catalog of reasons for suffering. Sometimes we will suffer for following God, but that is clearly not the only kind of suffering we see in Scripture. Sometimes the reason is hidden. Sometimes we don’t get a reason. So what are we to do? How do we face another day, another meltdown, another shattered dream?

We look to God.

I know, I know, that sounds trite. A “Jesus Juke”. Something the person who has never had a problem says. I get it. I am tempted to respond that way, but beyond the cliché there is something real. When I say “look to God”, I mean it. Look to God’s character. When we do this, something very important comes to light.

Throughout the Old Testament, God is patient with his people. Old School King James: “long-suffering”. Over and over again God’s people fail. Adam and Eve, Cain, Abraham (often the same failures repeatedly), Jacob, Moses, the entire book of Judges, Saul, David, Solomon . . . you get the picture. God never abandons his people. He never walks away. They provoke his anger, yet he is patient. When his people repent, he is always there for them. He may have seemed far away, silent, but he is always closer than they think. Perhaps the most dramatic picture is the book of Hosea – a man who is repeatedly betrayed by his wife, who suffers greatly because of it, but who sees restoration and healing. Hosea is a picture of God and his wife Gomer is Israel. God understands suffering and is in his very nature long-suffering. But this is not the end of the story.

 In Jesus we see something more. Not only does God suffer because of his people, in Jesus he suffers with his people. Paul, in Philippians 2:5-11 reminds us that Jesus was God who chose to become a slave, a human and to die a violent death on our behalf. God suffers with his creation. God suffers for his creation. 

When we ask “why?!”, we mostly want to know that this suffering matters, that someone cares. Jesus shows us that God does care, that he is paying attention even if we do not see it. This changes everything. When we realize that God suffers on behalf of his rebellious children, the very children who broke his beautiful creation, when we see that he has taken the job of repairing the breach on himself, we can be encouraged to face the next day, the next challenge, the next . . .

We do not always see or understand how or where God is at work. We know, we have seen, that he is trustworthy. Jesus reminds us that God sees even the sparrow fall and that we are worth far more than a sparrow (Matt. 10:29-31). 

“Why?” is an important question, a question that does not, I believe, offend God in the slightest. It is a question we ought to ask. But we can’t live there. In Jesus God shows us that we don’t have to. In Jesus God holds out his hand to us and says

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Matt. 11:28-30)

Written by Kevin O’Brien

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

Seasons of Doubt

Hi Friends, it's April! I can't wait to see flowers start to bloom and trees start to bud after this winter season. Living in northern Indiana, we get to experience all four seasons very distinctly.

The theme in the Hope Anew Online Community this month is Questions, especially regarding God, Scriptures, and faith. This journey in disability and special needs has a way of making us question and rethink our worldview and priorities. Sometimes, whether we want to question them or not. We want to encourage you that if you are going through a time of unrest in your view of life and God, the Hope Anew Online Community is a safe place to voice those doubts, ask those questions, and work through that process. 

God is incredibly patient and understanding with us. He invites us to come to Him with our cares, fears, doubts, disappointments, misunderstandings, anger, and grief. He offers salvation because He knows we are a mess. He doesn't expect us to come to Him polished and perfect. He holds His arms wide in welcome, loving us as we are, and holds our hand as we take the next step in becoming more like Him. 

If you are currently in a time of questioning God, feeling abandoned and disillusioned by Him, keep asking, keep seeking, keep bringing those doubts, fears, anger, and grief to Him. Just as winter in Indiana can seem like it will never end, time and history show us that it will. Spring will come, flowers will bloom in their own right time if we wait for it.

If you keep pressing into God, asking questions, seeking HIM for who He is, He will meet your need for Him. His answer may not be what you were expecting or desiring, but it will be a good answer because that is His character. He is a good Father. He sees you and has promised never to abandon His children. 

All fees related to the community have been waived, so you can now join for free. I’m loving having a supportive, encouraging community of parents who “get it” and would love to have you join us!

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!

Embracing God’s Love for Special Needs Parents

This special needs parenting journey is challenging. Sometimes it feels like we’re drowning in appointments and anxiety, and other times it all seems manageable, but either way, something will happen to throw a monkey-wrench in everything. Something hard, as if we weren’t experiencing enough hard as it is. A rough day. Another diagnosis. A financial hardship. A sickness or hospitalization. Or our current situation of the spread of coronavirus and our social distancing and losing the village that we relied on--our churches, schools, children’s therapists and specialists, etc. It is easy in times like that to feel overwhelmed and to ask God a plethora of questions.

A few years ago, I was having an exceptionally hard day and I felt myself getting angry at God. “Why God? Why is everything so hard? Where are you? You’re supposed to be a good God and I don’t see you doing any good in this situation.”

I raged silently at a God who felt just as silent.

I knew I desperately needed some time to be alone with God, but my boys needed dinner and attention. And then, bedtime rolled around.

After my older son, about four or five years old at the time, was all snuggled in bed and we had read his book before bed, we prayed together. Sometimes I did the praying, sometimes we did prayers fill in the blank style as he could only say one or two-word phrases. I would say “thank you God for ____” and then he’d respond with something he was grateful for. Usually it was Mama or Dada or Baby (his little brother) or Birds (what he called his ipad because he loved to play Angry Birds on it) and so I decided to go with the fill-in-the-blank style prayer.

Me: “Thank you God for ____.”

“Eesus!” he said with a grin.

I choked back tears as I told him, “Yes, thank you God for Jesus.” I’ve never had any indication that he understood anything relating to God, Jesus or Bible stories, except for identifying “baby Eesus” at Christmas time. I’ve never prayed before using the words “Thank you God for Jesus.” It was his own spontaneous thought and it filled my heart with hope and joy.

We finished our prayers and I kissed that precious little guy goodnight and as I left his room it hit me: God had answered my angry prayers through the mouth of a child who would need years of speech therapy to be able to talk like his peers. I had demanded God tell me where He was and why it felt like He wasn’t caring for us. And He gently reminded me that He loved me and my children so much, He gave us Jesus.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.” John 3:16 NIV

Oh, how amazing, how incredible is that?

The more I thought about God giving us Jesus, I realized that the Creator of our universe can relate to our special needs parenting journey in three unique ways that can encourage us:

God treasured His child, even before His child did a single thing.

“After his baptism, Jesus came up out of the water and the heavens were opened and he saw the Spirit of God descending like a dove and settling on him. And a voice from heaven said, This is my dearly loved Son, who brings me great joy.” (Matthew 3:16-17 NLT).

Jesus hadn’t yet done a single miracle or shared a parable and yet God was proud of Him. He called Jesus His beloved Son. He found great joy in Him.

And as parents, we do the same thing. We love them the moment we first meet them, and even though they need us to do everything for them, even though they cannot do a single thing for us in return, we love them. No matter how much care they need in their lifetime, we will still love and treasure and advocate for our child. They don’t have to do anything to earn our love, we just love them with all of our beings and are willing to do anything to help and protect our children.

God watched His child be rejected, struggle, and suffer.

God knows what it’s like to see your child suffer and struggle. He watched people not understand His son, watched them mock and test His son. He witnessed His child get beaten and whipped, carry a heavy wooden cross, and then have nails hammered through His wrists and ankles pinning Him to that cross. His son suffered for hours, and I’m sure God longed to take His son off of that cross, to hold Him tight in His arms, and take His son far away from the cross. Oh, yes thank you God for Jesus!

He knows how much we love our children, and the greatest thing of all is that He loves our children even more than we do.

He joins in our heartbreak when we watch our children experience pain or go through medical procedures. He grieves with us when we watch our children struggle to do things that come so effortlessly to other children. He understands our longing to change the circumstances for our children. He understands our pain when we see our children not be understood by others or mocked and excluded by others. 

God had a greater plan, and it was for our good.

But God had a plan. He knew there was a glorious purpose in His dearly beloved son’s struggles and suffering. I’m sure that didn’t make the pain and helplessness go away as His child hung on a cross. His love for His son was as fierce as ever, but His love for you and me and for our children and all of humanity was steadfast and unwavering. Yes, thank you God for Jesus!

Sometimes we have a plan for our children they cannot see. They cannot see the purpose in a medical test or a procedure or the therapies they go to, but we know the purpose for it. They don’t always see us advocating for them with schools and insurance companies and our churches, but we advocate because we have a plan and goals in mind to help our children be included and get the supports and services they need.

We may not see all the details of God’s plan and purpose on this side of eternity. We will see glimpses of it here and there, but it is in trusting that God has a plan that will help bring hope, purpose, and meaning to this special needs parenting journey.

“God showed how much he loved us by sending his one and only Son into the world so that we might have eternal life through him.” 1 John 4:9  NLT

Yes, my son was definitely onto something. Thank you God for Jesus!

May we be able to grasp God’s unstoppable, never-ending love for each of us this Holy Week and always. 

Bio: Jenn Soehnlin is a middle school English teacher and mother to two boys who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying Scripture, and special needs parenting at www.embracing.life. You can join her Facebook group for special needs mothers Embracing This Special Life for online support, community, and encouragement. 

4 Steps for Navigating Fear

In last week’s article, I shared how fear serves an important role and acts like the warning light on the dash of our car.  How did last week go? Did you recognize this warning light going off in yourself, your spouse, or child?

If your answer is yes, then you may be wondering what to do. Here are four steps to help you navigate your fear and for you to help your family members navigate their fears:

1.     Pray & remind yourself of who God is:

Take a deep, slow breath or 20 and share your fears with your heavenly father. Ask Him for His peace and wisdom. Remind yourself of those truths in God’s word about who He is and His character. For example, He is sovereign and all knowing.

2.     Develop & implement a plan:

For example:

1. Determine steps needed to protect your family from getting sick, such as limit social interaction, wash hands, etc.

2. Establish a new routine – after being somewhere, get in car and use hand sanitizer on hands, inside door handle, phone and wallet before touching the steering wheel

3. Check into alternative options to meet medical needs, if the need arises

4. Think of alternative solutions for social engagement

5. …..

This will not be a one and done plan. As you implement it, you will need to revise it to better meet your family’s needs. There will be items on the list that you won’t have immediate solutions for but part of your plan may be steps to find those solutions.

3.     Find a community:

Fear becomes more paralyzing when we go through it alone. Find a community that gets it but be aware of the culture of that community.  You become like the people you spend the most time with. If the community is negative and not hope-filled, that will feed your fear and not reset it.

As a side note, if this is a need that you see in your life, I would like to invite you to join the Hope Anew Online Community. This is a great time to join as we have waived the membership fee. You can learn more at HopeAnew.com

4.     Look for ways to bless others:

When we look for ways to be “Jesus with skin on” to others, it can take our focus off ourselves and we can receive joy as we encourage others.

During this time you may need to be creative but it can become a fun family project.

As you are figuring out how to navigate this new season, remember that God is with you. He loves you and your family. He will never leave you and never forsake you.

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!

Written by Jonathan McGuire

5 Simple Activities To Talk About Big Feelings

Covid-19 has stirred up some big feelings. What is happening in our own communities and around the world is so very unexpected and unusual it is difficult to work through the emotions that have come along with all this change. Talking about feelings, naming them and acknowledging them together can be incredibly helpful at times like this. But where can we begin?

Knowing where something hurts, or what emotion is being felt doesn’t come instinctively to some members of my family and I find myself reaching for creative ways to get the conversation going to help me to support my children through this time where I’m sure they’re wrestling with huge emotions – fear, disappointments, worry, uncertainty in all the changes, helplessness, out of control. Talking together gives a chance to bring myself alongside and support more closely, and for us helps us to pray more specifically having talked about how we’re doing.

Here are 5 simple activities to help us talk about big feelings:

1. Out of control get a large piece of card or paper and draw a big circle in the middle. Using old magazines to tear out words and pictures, and pens to draw and write fill the circle with things you can control and outside the circle with things out of our control. Picking one of the things in our control that we could act on can even bring some relief to the big feelings.

2. Body mapping – make gingerbread cookies talking about what each part of your child’s body might be feeling like right now. While they’re cooking maybe draw round the cookie cutter and mark the parts of the body that feel different (like butterfly tummy, or aching head) and be detectives together to work out what emotion might be making our body feel that way.

3. Playdough faces – use Playdough to make faces with different expressions. Make one for how you are feeling today.

4. Color– Get out some paint and paint those feelings – what kind of character are they, what do they look like, what color are they?

5. ·Charades– play emotion charades, taking turns to act out and guess emotions. Have a good laugh together and then chat about which one each of us have felt recently.

I hope these ideas are as useful to you as they have been to us. These are unsettling times for us and our children and anything that can help me to stay closely alongside, ready to help and support seems to be a worthwhile thing – I guess chatting with them about their big feelings is inside my circle of control!

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

Is It Okay To Fear?

Is it okay to fear?

This is a question I keep finding myself asking, especially with the current COVID-19 pandemic. As I talk with other people and watch posts on social media, I see an unspoken tension between families who are fearful about the current health pandemic and those who say, “Do not fear and be courageous.”

Families fear for their parents or spouses that fall in the high risk category. Mothers are fearful for their spouses and children who have “essential” jobs and still have to go out. Parents are fearful of losing their jobs or how to provide for their families if they have lost their jobs. Moms and dads are fearful of how to protect their medically fragile children and make sure they have what they need whether that is medication, special equipment or even special food for restricted diets.

I remember standing in church singing, “There’s No Fear In Love.” This is a direct quote from the first sentence 1 John 4:18. The entirety of this passage reads:

"There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love."

Every time I sang this song, I would internally scoff and think, “Really…no fear.” Then I would get irritated as I thought of those who received a new diagnosis for their child and were scared or found themselves in a situation that was out of their control such as a job loss, cancer diagnosis or myriad of other fear inducing scenarios. I would half-heartedly sing through the song and move on.

If you look at the verse leading up to 1 John 4:18, it says the following:

“This is how love is made complete among us so that we will have confidence on the day of judgment: In this world we are like Jesus.”

“There’s no fear in love” refers to the day of judgement. Those who have a relationship with God through His son, Jesus, do not have to fear on the day of judgement.

So back to the original question. Is it okay to fear? Yes…but. 

God created our emotions, including fear. Fear can serve a beneficial purpose. It can help trigger that fight or flight response. If a lion starts to chase you, fear pushes you to take action and to try to escape. It is like the warning light on your dash that tells you something needs to happen. If you ignore that low fuel light for long, you will find that your car will stop moving.

That light on your car’s dash makes you pause and put together a plan. You mentally go through the check list of determining how far you can go, when you will fill up and what gas station you will stop at to get gas. A plan is put in place.

Similarly, when fear lights up on our internal dashboard it should make us pause, figure out why it is showing up and then determine our response or action plan. 

You may be thinking to yourself, you said, “Yes…but” when you asked if it is okay to fear. What is the “but.”

Have you ever watched a YouTube video or National Geographic show where a giant predator starts to attack its prey and the prey freezes in place? This is when fear becomes bad. When fear becomes all-consuming to the point that we are frozen in inaction.

It is also bad when it becomes chronic. When we live in a chronic state of  “fight and flight”, our bodies will respond negatively. It will negatively affect our emotional, physical, and spiritual health.

So what can we do when we see that dash light? Next week we will look at four steps to walk through when we start to feel fearful.

As you look at how you are doing during this time, are there any dash board lights going off? If you are married or have children, do you see any warning lights going on with your family members?

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, all membership fees have been waived.

The Prayers You Say Waiting at the Food Counter

“And those servants went out into the roads and gathered all whom they found, both bad and good. So the wedding hall was filled with guests.” (Matt. 22:10 ESV)

One of the most challenging things to do as a special needs parent is to take your child out to crowded public places, specifically restaurants, as there is frequently a great deal of stimulus and activity. There are also lots of variables, even when you go to a place you’ve been to before and your child is experienced with, as everyday can bring something different. But when you go to a completely new place, then it can quickly feel like the whole world is up for grabs, and you do your best to try to assess the situation quickly.

One recent weekend, I found myself in a new restaurant with my son and while I was excited to eat there with him, I realized the difficulties that were going to come with it soon after we entered.

It was relatively empty with only a few tables being used in the main dining area, but I still chose a table as far back as possible as I have become accustomed to, and told him to wait while I ordered the food. I raced up to the counter and began to scan the rather full menu and made choices as quickly as possible, when all of a sudden I heard a peculiar sound. I turned to the side to glance over at my son, assuming the worst, and standing there I observed my son having opened a folding door near our table. The folding door covered up some mechanical things in the restaurant and he had become very curious with the machinery, and the folding door. I quickly put my order in, paid and ran back over to my son to let him know to stop and he couldn’t do that, but the whole time in between the ordering and getting back to the table seemed like forever. I could have easily just screamed across the restaurant at him but I didn’t want to embarrass him, yet I couldn’t help but start to feel embarrassed anyway. 

I went right back up to the counter to wait for the food, and grabbed all of my necessary cutlery and napkins and such, and went right back to the table while we waited for the food to arrive, changing the apps on his Ipad to keep him distracted. The food came a few minutes later and that instantly calmed him, as usual, and we proceeded to have a relaxing time. That is, until it was time for him to be done, and after sitting for an extended time deciding  he was done and needing to get up and walk. I promptly cleaned up and we went to the bathroom and left, getting through another meal the same way we usually do, but also grateful that we didn’t have a scene with him opening the closet door earlier. But as we walked out I remembered that not one person made a comment to us the entire time we were there, and I considered that maybe even after all these as a special needs parent, I still struggle. 

I struggle with my son being called out for bad behavior, or actions that just don’t look normal, or with myself for appearing like some frantic parent who can’t handle their child. But the fact remains that when no one makes those comments, and when we can get in and out of a restaurant without a comment or even a look, I wonder to myself, am I trusting the prayers I say while i wait at the food counter? Am I believing in the God I pray to that he is hearing me when I struggle with those experiences, and remember the power in the prayers that I say when I need his help the most? It is a solemn wake up call for me, that the God I pray to once reminded us that all should be invited to the wedding feast, so that every table, and every heart, was full.

Written by John Felageller

Connect with John on his Facebook page: www.facebook.com/johnsspecialneedsblog/

"What Do You Mean There Is A Problem With My Child"

“What do you mean there is a problem with my child?”

In some ways the parent who refuses to acknowledge their child’s special needs is harder to help than the person who blames themselves or God or the devil for the reality they are facing (see the previous articles in this series for all of these responses). Sometimes it is hard to know what to do or to say even when you have been there yourself, even when you too have wanted to deny this reality.

As a society we have become much better at giving people with special needs dignity and respect. We don’t tolerate language or statements about people with special needs that were commonplace when I was in school. All of this is a step in the right direction, but sometimes I wonder if in our desire to do better, we haven’t also made a serious mistake.

Have we made it too hard to acknowledge brokenness?

I feel for the parent who does not want to acknowledge that their child has “special needs”. I have been there. It feels like a betrayal or failure. It dashes hopes and dreams, makes us feel like we are somehow less and means admitting that we are not really in control. Even more, I feel for the child who will not get the help they so desperately need until their parents acknowledge the truth. When a parent refuses to see that their child needs help like therapy or to be in a special needs classroom, they (usually inadvertently) hurt their child. When we are so afraid of offending that we do not speak up to actually help, are we being kind?

Compassion demands that we tell the truth. No, we should not be brutal or mean spirited about it. Yes, some people delight in telling the truth to inflict pain. But we do not abandon the truth because some abuse it. Healing can’t happen until the truth is seen. Our children with special needs are broken. But that is only a part of the story.

In the Hebrew and Christian Bibles, Genesis 1 and 2 tell the story of creation. God creates a glorious universe, a world teaming with beauty and life. We are told in Genesis 1:27 that God creates human beings – male and female – in His image! He declares all creation good and places humans in the middle of a garden. He gives us purpose and companionship. He gives us Himself.

 And we mess it up. Theologians call it “The Fall”. It happens in Genesis 3–pretty much the same page as all of the good stuff that came before. Everything is affected. As one of my professors used to say, “The Fall goes all the way down.” 

The truth is that we are ALL BROKEN.

Not a popular sentiment today. On the one hand, I am encouraged by the almost gut level reaction that people have to someone being called broken. It is right and good to give everyone dignity and respect, no matter who they are, where they come from, what their status or circumstance in life or even their abilities. But that doesn’t mean we cannot or should not acknowledge true brokenness – whether it is our own or the brokenness of others.

Often, we define our entire identity around one aspect of who we are. I am part of the (fill in the blank) community. It is easy to understand why a parent would not want their child’s disability to be the defining feature of their identity. I get it. I myself have resisted being “autism dad” as a writer for well over a decade.

Here’s the truth: I am the father of an autistic child. Nathan is broken. I can’t fix that. The difference between his brokenness and mine? Most of the time I can hide my brokenness to the outside world. He can’t. But that is not the sum total or even the most important part of my identity or his. Being broken is universal, but it is the beginning of the story not the end.

When we realize that everyone is broken, we can – have to – give up the idea that we are better, or worse, than anyone else. We can give up playing pretend. We can stop curating our Facebook/Instagram perfect lives and get real. 

My identity? First and foremost, above, before and through every other aspect of me is found in the fact that I am created in the image of God and redeemed in Christ. That is good news. News beyond any trauma or disability, beyond any one aspect of who we are. And as we will see next time, it points to a better way of understanding suffering.

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

Myths of Caregiver Stress

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 Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.

6 Ways To Care For Your Spouse

When your life revolves around caring for your kids, especially children with additional needs, it is easy to see why marriage can take a backseat. We’re in survival mode, and we know our spouses are able to take care of themselves. But that doesn’t mean they don’t need our love and support. 

There’s a higher divorce rate between couples with children with special needs, and I can totally see why. Marriage is hard enough, but when you add the challenges and stresses of special needs parenting, there are bound to be extra bumps in the marriage.

BUT...you made a commitment to love, honor, and cherish your spouse. Here are six ways you can do that:

1. Have a heart to heart. 

You and your spouse may have different ways of dealing with your child’s special needs.  They are probably dealing with this journey different than you. But that doesn’t mean they don’t care about your child. It doesn’t mean they’re not experiencing their own grief and struggles. It doesn’t mean you both don’t have goals and dreams for your family to not just survive, but to thrive together. 

Take time to listen to each other. Ask questions. Make plans together. Determine to travel this journey together. To fight together for your children, and to fight for each other.

2. Do one thing for your spouse that shows you were thinking of them.

We have a million things on our plate, thinking about doing something for our spouse may not be anywhere near our plate. But I encourage you to think about something you can intentionally do for your spouse that would mean a lot to them and show them you were thinking about them. If your spouse has asked you to do something and you’ve been procrastinating on it, choose to get it done to honor them. Or if they’ve briefly mentioned something they would like done or would like to do, make it happen. 

If you don’t know what your spouse would like done, just ask, you may be surprised! I used to think my husband wanted the kitchen clean, laundry done, floor swept, dinners cooked, the whole shebang, and I felt like I was failing him because I couldn’t do it all. So one day I asked him what is the number one thing he wanted done around the house.

I was surprised when he said he just wanted the papers around the house to be organized, that the piles of paper stressed him out. With the kids’ school work and therapy evaluations and IEP papers and mail and bills, papers just pile up and I am oblivious to them. They don’t bother me so I don’t think to organize them that often, but now that I know it bothers him, I intentionally set aside time each week to sort through, file, organize, and recycle papers. He always notices when I do it and feels honored. 

3. Take some time to do something fun together.

Yes, I know this one is easier said than done sometimes. Especially when it’s hard to get childcare. If you can get childcare or respite to go on a date, do it! Go somewhere fun, and enjoy yourself and your spouse’s company.

If you can’t get childcare, think of something creative you and your spouse can do at home. Sometimes my husband and I would have picnic dates after the kids went to bed. We’d eat a late dinner or a dessert on the living room floor on a blanket with candles and just talk. Or watch a movie. It wasn’t fancy, but it was special because we made it so and chose to just focus on us.

4. Gift something special for your spouse just because you love them.

You don’t have to wait for a special occasion to buy or gift something to your spouse that you know they would appreciate. It doesn’t even have to be something big. It could be a funny card that reminded you of them, or something they mentioned they would enjoy having, or you could make or buy their favorite dinner or dessert.

5. Let your spouse know what you love about them.

It can be easy to feel like we’re letting people down or we’re not doing enough until someone tells us otherwise, and then it makes our day and makes a stand a little taller. It only takes a minute to let your spouse know how much they mean to you, or how much you appreciate certain aspects or qualities about them. You could also send encouraging texts throughout the day, leave a love note somewhere they’d find it, get them a funny card they’ll appreciate and write a few things you admire about them. 

My husband used to travel a lot for work, and I made a habit of writing him a little love note or getting him a card and stashing it somewhere in his suitcase or backpack. He never said anything about any of those notes, but I kept doing it anyway. One day, while we were packing up to move, I found a stack of these love notes and cards in his Bible he keeps in his nightstand. He had kept and treasured them all.

6. Hug, kiss, hold hands, all that mushy stuff.

When my husband would come home from work, a lot of times I’d be busy cooking dinner or doing something for the kids that I’d barely even acknowledge my husband’s arrival. One day I felt really convicted of that. I wanted our home to be a place he wanted to come home to, where he felt loved and wanted and so I determined from then on that when he came home I’d stop what I was doing and give him a quick hug or kiss and let him know I was glad to see him.

Hugging, kissing, shoulder rubs, cuddling, holding hands--whatever your spouse’s favorite form of physical touch is, make sure you’re incorporating it. Sprinkled in throughout the day, they are encouraging reminders that your spouse loves you and wants to be with you.

You may or may not have noticed that all these suggestions cover each of the five love languages. If you know your spouse’s love language, make sure you are speaking their language most often! But regardless of what love language you or your spouse have, incorporating all of them will do wonders for your marriage, and for your spouse. If you want to learn more I encourage you to check out Jolene Philo and Dr. Gary Chapman’s book Sharing Love Abundantly in Special Needs Families: The Five Love Languages for Parents of Children with Disabilities.

You can also check out our latest podcast episode, where we discuss embracing our spouses and this special needs parenting journey.

Nurturing our marriage and our spouse is not only good for “the one our heart loves” (Song of Solomon 3:4), but it is also healthy for our own emotional well-being, and for our children to see that their parents love each other.

Written by Jenn Soehnlin

Bio: Jenn Soehnlin is a mother to two little lads who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying scripture, and special needs parenting at www.embracing.life. You can also find her on Facebook, Twitter, and Instagram.

When You Want To Quit

Do you have days when you just want to quit? Days when you wish you were a kid again and your parents took care of everything, but now you are the Dad or Mom and you’re the one that has to provide, take care of, figure out, fight the battles, create a calm place in the midst of the chaos and storms of life? Not only is it hard, you may not even have a clue what you’re doing or how to go about it, yet you are responsible for doing it and achieving the needed result.

Here are 3 things do you do when you just want to quit:

1.     Take a breath or a walk.

Get a little space and a little perspective. Come up for air. You’re likely tired and being physically tired makes it hard to think clearly and make decisions or just do daily tasks. Of course, getting some sleep is great, but next to that, deep breathing does wonders for our physical and mental health. It helps release stress and calm the nervous system. Exercise does too and releases endorphins that help you feel better.

2.     Schedule time with a friend.

Sharing your challenges and struggles with a safe friend, maybe a friend who has walked some of life’s challenging paths ahead of you, often can help shed some light and perspective on your situation and can be just what you need.

3.     Cry out to God.

You already know you can’t do this on your own. That’s why you want to quit! It’s hard! But, fortunately, God already knows this life is more than you can handle and that’s why He clearly promised to be with you and not to abandon you. Ask for what you need. Do you need direction? Ask. Do you need insight? Ask. Do you need to know you’re loved and not forgotten? Ask Him to show you and keep your eyes and ears open for His answer.

This life is hard. We live in a broken world with pain, sadness, disease, and evil. This is not our home. We are just passing through. It may seem like you’re stuck here forever, like this struggle is never-ending. But, you are one day closer to your real home. Your home where your all-knowing, all-powerful, unconditionally loving, good Dad rules, has everything taken care of for you. There is no hard. There is no pain. You’re one day closer to being truly home.

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!

5 Powerful Ways Special Needs Parents Impact The World

5 powerful ways special needs parents impact the world may sound hyperbolic to people looking in on the disability community. But I've been part of a caregiving family all my life, and I assure you that special needs parents impact the world every single day. We just don't realize it. In fact, we tend to discount the importance of what we do. To see if that's true for you, read through the following statements.

• When someone asks about my job, I say things like "I'm just a mom" and "I'm just a dad."

• I sometimes think other people contribute more to society than I do.

• I sometimes think my life is too ordinary to make a difference.

• I rarely ask our physician questions about treatment options for my child because the doctor is the expert.

• I don't say much at parent-teacher conferences or IEP meetings, because the teachers and administrators know more about education than I do.

• I care for my child, but that's just what parents do. It's no big deal.

If 1 or more of the above statements describes you at least once in a while, you are selling yourself short as a special needs parents. As Bob Newhart said in one of the best comedy sketches ever, you need to stop it because your work caring for a child with special needs is making a huge impact on the world in these 5 ways.

1. You impact your kids' lives. All parents impact their kids' lives. That's no different for parents of kids with special needs because that's what parenting is. That's what parents do. We impact our kids' lives as we care for them, comfort them, teach them, provide for them, and encourage them. We are training them and creating a framework of support so they can be as independent as possible throughout their lives.

2. Your love changes your child's life trajectory. When you meet your child's basic physical and emotional needs, you are programming the wiring of her brain. Your daily love and care makes her brain more resilient, more intelligent, and more loving for the rest of her life. With every cuddle, every changed diaper or pad, every book read, every bath, every song you sing, and every walk around the block, your love and care maximizes your child's potential and enriches her life.

3. You fight against the power of evil. The brains of children who are raised without a loving primary caregiver, even if their physical needs are met, suffer lasting effects throughout life. Their relationships tend to be unhealthy, and they make poor choices. They are more prone to develop serious mental and physical illnesses, they age prematurely, and their life expectancy is shorter. By caring for your child with special needs, you fight against and minimize these evils. To put it another way, love is your super power.

4. You are an example to your children. I watched my mother care for my father for 38 years, starting when I was 2. She did many things right and some things wrong, and both were an example to me and my siblings. She wouldn't ask for help and required far too much of us as children. Because of her example, I now encourage parents raising kids with special needs to ask for help when they need it and to make space for their typical children to be kids and not caregivers. Through her example, I also saw that the foundation of loving someone in sickness and health is built on ordinary moments of care and compassion in which the holiness of God is displayed. In the same way, you are an example to your children now and for as long as they live.

5. Your care and compassion for your child with special needs testify of Christ in you. People outside the disability community see you and your child. Your caregiving is love in action, which means you are a living testimony of Christ. Even better, when onlookers say things like "I couldn't do what you're doing," you have an opportunity to share your faith story. You can explain how your dependency on Christ is why you can do what you do. God will use both your spoken and your lived testimony to draw onlookers closer to Him.

These 5 powerful ways special needs parents impact the world are the tip of the iceberg. How do I know that? Because God considers your sacrificial acts on behalf of your child to be valuable and worthy. He never discounts them. You shouldn't either because God is using what you do for your child to change the world!

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. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Father I Want To Know Thee

“Father I want to know Thee, but my coward heart fears to give up its toys. I cannot part with them without inward bleeding, and I do not try to hide from Thee the terror of the parting. I come trembling, but I do come. Please root from my heart all those things which I have cherished so long and which have become a very part of my living self, so that Thou mayest enter and dwell there without a rival. Then shall my heart have no need of the sun to shine in it, for Thyself wilt be the light of it, and there shall be no night there.” – A.W. Tozer

These are the words I wrote in the front my Bible in 2004, before heading to Africa as a missionary, a desire of mine since I was a young child. It was the sincere prayer of my heart that God be everything to me…and I thought He was. I had committed to and was joyfully living out, “God, I’m yours send me wherever you want, whenever you want me to go, and have me do whatever you plan for me” a commitment I had made in junior high.

That was before special needs entered my life. That was before two years of sleepless nights. That was before the dreams for my family and life were crushed beyond recognition or hope of repair. That was before I lost my health and before we lost our home which was such a gift and where we had built a new dream.

This week I sat in that home as we get rid of most of our things and read these words again. I’d forgotten about them in the front of that Bible, rarely used in the last many years in favor of a newer one and a different translation.

What a difference the depth of meaning these words have now nearly 16 years later. I’ve wanted God and a healthy child, God and a meaningful ministry outside my family, God and my welcoming, restorative home. None of these desires are wrong – a health child, a meaningful ministry, and lovely home.

Yet, when these things have been taken away my coward heart not only fears to give them up and bleeds at the parting (that’s called grief), but at times has felt angry at God over the rending of my wants and toys.

 There is a rending, a breaking of a dream, a shattering of something wonderful. There is brokenness. This world is cursed. It is crushed by sin. Where there is sin and brokenness, there will be pain. And I’ve learned that God weeps with me. God is a God of wholeness, creativity, beauty, love, forgiveness, holiness, and generosity. He is a God that will bring beauty out of our brokenness. When this broken world and the enemy of our soul crushes us, He desires to be our everything and for us to find our comfort and hope in Him.

Written by Sarah McGuire